Adolescent Health Care: A Practical Guide
Understanding Legal Aspects of Care
Whenever a health care practitioner treats an adolescent, it is essential for the practitioner to have a clear understanding of the legal framework within which care is to be provided. Because many adolescents are minors—younger than 18 years in almost all states—their legal status differs from that of adults. Therefore, the laws related to their health care have distinct aspects based on their age and legal status.
For adolescents who are 18 years or older, the governing laws are essentially the same as those for other adults. For adolescents who are minors, the laws may be different. The legal issues that arise most frequently in providing health care to adolescents who are minors fall into three specific areas:
- Consent: Who is authorized to give consent for the adolescent's care and whose consent is required?
- Confidentiality: Who has the right to control the release of confidential information about the care, including medical records, and who has the right to receive such information?
- Payment: Who is financially liable for payment and is there a source of insurance coverage or is public funding available that the adolescent can access?
Over the past few decades, the legal framework that applies to the delivery of adolescent health care has evolved in several significant ways. First, the courts have recognized that minors, like adults, have constitutional rights, although there has been considerable debate concerning the scope of those rights. Second, all states have enacted statutes to authorize minors to give their own consent for health care in specific circumstances. Third, laws governing the confidentiality of health care information have changed in ways that affect adolescents. Finally, the financing of health care services for all age-groups and income levels is undergoing major change, at an increasingly rapid pace, which has had and will continue to have a significant impact on adolescents' access to health care.
Beginning with In re Gault, (1967), in which the U.S. Supreme Court stated that “neither the Fourteenth Amendment nor the Due Process Clause is for adults alone,” the Court has held repeatedly that minors have constitutional rights. The Gault decision, which accorded minors certain procedural rights when they are charged by the state with juvenile delinquency offenses, was followed by others recognizing that minors had rights of free speech under the First Amendment (Tinker v. Des Moines Independent School District, 1969) and that they also had privacy rights (Planned Parenthood of Central Missouri v. Danforth, 1976; Carey v. Population Services International, 1977). Although the Supreme Court subsequently rendered decisions that were more equivocal about the scope of minors' constitutional rights, the basic principles articulated in the early cases still stand.
The area of most frequent constitutional litigation has been the rights of minors with respect to reproductive health care, particularly abortion. The early cases, Carey and Danforth,clearly established that the right of privacy protects minors as well as adults and encompasses minors' access to contraceptives and the abortion decision. The subsequent history of constitutional litigation with respect to abortion has been complex. After the decision in the Danforth case, which held that parents cannot exercise an arbitrary veto with respect to the abortion decisions of their minor daughters, the U.S. Supreme Court decided a series of cases—beginning with Bellotti v. Baird (1979) and continuing more recently with Planned Parenthood of Southeastern Pennsylvania v. Casey, (1992)—addressing parental notification and consent issues related to abortion. The collective import of these cases has been that although a state may enact a mandatory parental involvement requirement for minors who are seeking abortions, it must also, at minimum, establish an alternative procedure whereby a minor may obtain authorization for an abortion without first notifying her parents. This alternative most often takes the form of a court proceeding known as a “judicial bypass.” In the bypass proceeding, a minor must be permitted, without parental involvement, to seek a court order authorizing an abortion: If she is mature enough to
give an informed consent, the court must allow her to make her own decision; and if she is not mature, the court must determine whether an abortion would be in her best interest. Many, but not all, states have enacted such parental involvement or judicial bypass statutes, some of which have been implemented, although others have been enjoined by the courts. As of January 2007, at least 34 states have laws in effect that require either the consent or notification of at least one parent; all but one of these states provides for a judicial bypass and several provide for consent or notification of an adult family member other than a parent.
State and Federal Laws
Although the constitutional litigation concerning minors' rights in the reproductive health care arena has attracted significant attention, most of the specific legal provisions that affect adolescents' access to health care are contained in state and federal statutes and regulations or in “common law” decisions of the courts. These provisions cover a broad range of issues related to consent, confidentiality, and payment and are critical in defining the parameters of what practitioners in the adolescent health field are legally permitted and required to do. Therefore, practitioners providing services to adolescents must develop a familiarity not only with the general constitutional principles that have evolved in recent decades but also with federal laws and state laws, including court decisions, that apply in their own states.
The law generally requires the consent of a parent before medical care can be provided to a minor. There are, however, numerous exceptions to this requirement. In many situations, someone other than a biological parent—such as a caretaker relative, foster parent, juvenile court, social worker, or probation officer—may be able to give consent in the place of the parent. Moreover, in emergency situations, care may be provided without prior consent to safeguard the life and health of the minor, although parents must be notified as soon as possible thereafter.
Highly significant for the adolescent health care practitioner, however, are the legal provisions that authorize minors themselves to give consent for their care. These provisions are typically based on either the status of the minor or the services sought. (See the Appendix at the end of this chapter, which includes a general overview of these provisions in each state.)
All states have enacted one or more provisions that authorize minors to consent to certain services. These services most frequently include contraceptive services; pregnancy-related care; diagnosis and treatment of sexually transmitted disease (STD) or venereal disease (VD); human immunodeficiency virus (HIV), or acquired immunodeficiency syndrome (AIDS), and reportable or contagious diseases; examination and treatment related to sexual assault; counseling and treatment for drug or alcohol problems; and mental health treatment, particularly outpatient care. Not all states have statutes covering all of these services. Among those that do, some of the statutes contain age limits, which most frequently fall between the ages of 12 and 15 years.
Similarly, all states have enacted one or more provisions that authorize minors who have attained a specific status to give consent for their own health care. Pursuant to these provisions, the following groups of minors may be authorized to do so—emancipated minors, those who are living apart from their parents, minors serving in the armed forces, married minors, minors who are the parents of a child, high school graduates, and minors who have attained a certain age. Moreover, in a few states, explicit statutes authorize minors who are “mature minors” to consent for care. Few states have enacted all of these provisions and laws are frequently amended; therefore, practitioners are advised to consult their state laws and to ensure they have current information.
The Mature Minor Doctrine and Informed Consent
Even in the absence of a specific statute, “mature minors” may have the legal capacity to give consent for their own care. The mature minor doctrine emerged from court decisions addressing the circumstances in which a physician could be held liable in damages for providing care to a minor without parental consent. Unless a state has explicitly rejected the mature minor doctrine, in most states it means that there is little likelihood a practitioner will incur liability for failure to obtain parental consent provided that the minor is an older adolescent (typically at least 15 years old) who is capable of giving an informed consent and the care is not high risk, is for the minor's benefit, and is within the mainstream of established medical opinion. During the past few decades, diligent searches have found no reported decisions holding a physician liable in such circumstances solely on the basis of failure to obtain parental consent when nonnegligent care was provided to a mature minor who had given informed consent. A few states have rejected application of the doctrine in particular circumstances. The basic criteria for determining whether a patient is capable of giving an informed consent are that the patient must be able to understand the risks and benefits of any proposed treatment or procedure and its alternatives, and must be able to make a voluntary choice among the alternatives. These criteria apply to minors, as well as adults. Again, however, laws do vary from state to state and practitioners must become familiar with local requirements.
Privacy and Confidentiality
There are numerous reasons why it is important to maintain confidentiality in the delivery of health care services to adolescents. The most compelling is to encourage adolescents both to seek necessary care on a timely basis and to provide a candid and complete health history when they do so. Additional reasons include supporting adolescents' growing sense of privacy and autonomy and protecting them from the humiliation and discrimination that could result from disclosure of confidential information.
The confidentiality obligation has numerous sources in law and policy. They include the federal and state constitutions; federal statutes and regulations such as those that pertain to medical privacy in general, Medicaid, family planning programs, and federal drug and alcohol programs; state statutes and regulations such as medical confidentiality and medical records laws, privilege statutes, professional licensing laws, and funding programs; court decisions; and professional ethical standards. The federal government has issued extensive medical privacy regulations that affect the care of adolescents and adults, which are known as the HIPAA Privacy Rule and are of critical importance. Proposals are also frequently introduced in Congress that would affect confidential health care for adolescents, so practitioners should monitor ongoing developments carefully.
Because these varied provisions sometimes conflict or are less than clear in their application to minors, practitioners must have some general guidelines to follow—or questions to ask—when developing their understanding of how to handle confidential information. Confidentiality protections are rarely, if ever, absolute, so practitioners must understand what may be disclosed (based on their discretion and professional judgment), what must be disclosed, and what may not be disclosed. In reaching this understanding, practitioners may need to consider several questions; a few of the most relevant questions include the following:
- What information isconfidential (because it is considered private and is protected against disclosure)?
- What information is notconfidential (because such information is not protected)?
- What exceptionsare there in the confidentiality requirements?
- What information can be released with consent?
- What other mechanisms allow for discretionarydisclosure without consent?
- What mandatesexist for reporting or disclosing confidential information?
In general, even confidential information may be disclosed as long as authorization is obtained from the patient or another appropriate person. Often, when minors have the legal right to consent to their own care, they also have the right to control disclosure of confidential information about that care. This is not always the case, however, because there are a number of circumstances in which disclosure over the objection of the minor might be required—if a specific legal provision requires disclosure to parents; if a mandatory reporting obligation applies, as in the case of suspected physical or sexual abuse; or if the minor poses a severe danger to him or herself or to others.
When the minor does not have the legal right to consent to care or to control disclosure, the release of confidential information must generally be authorized by the minor's parent or the person (or entity) with legal custody or guardianship. Even when this is necessary, however, it is still advisable—from an ethical perspective—for the practitioner to seek the agreement of the minor to disclose confidential information and certainly, at minimum, to advise the minor at the outset of treatment of any limits to confidentiality. Fortunately, in many circumstances, issues of confidentiality and disclosure can be resolved by discussion and informal agreement between a physician, the adolescent patient, and the parents without reference to legal requirements.
The HIPAA Privacy Rule
In 2002, the final provisions of the HIPAA Privacy Rule were issued, which affect the health care information of adolescents who are minors, built on the framework of consent and confidentiality laws that had been developed over the past several decades. Specifically, when minors are authorized to consent for their own health care and do so, the Rule treats them as “individuals” who are able to exercise rights over their own protected health information. Also, when parents have acceded to a confidentiality agreement between a minor and a health professional, the minor is considered an “individual” under the Rule.
Generally, the HIPAA Privacy Rule gives parents access to the health information of their unemancipated minor children, including adolescents. However, on the issue of when parents may have access to protected health information for minors who are considered “individuals” under the Rule and who have consented to their own care, it defers to “state and other applicable law.”
Therefore, the laws that allow minors to consent for their own health care have acquired increased significance with the advent of the HIPAA Privacy Rule. The Rule must also be understood in the broader context of other laws that affect disclosure of adolescents' confidential health information to their parents. Specifically, if state or other law explicitly requires information to be disclosed to a parent, the regulations allow a health care provider to comply with that law and disclose the information. If state or other law explicitly permits, but does not require, information to be disclosed to a parent, the regulations allow a health care provider to exercise discretion to disclose or not. If state or other law prohibits the disclosure of information to a parent without the consent of the minor, the regulations do not allow a health care provider to disclose it without the minor's consent. If state or other law is silent or unclear on the question, an entity covered by the Rule has discretion to determine whether to grant access to a parent to the protected health information, as long as the determination is made by a health care professional exercising professional judgment.
HIPAA and FERPA
Health care providers should be aware of the confusing and perhaps conflicting rules that may apply to student health centers on college and university campuses. The confusion relates to whether the records at student health centers are covered by HIPAA or FERPA (Family Educational Rights and Privacy Act). FERPA is a complicated statute that deals with privacy issues of educational records of children, adolescents, and college students. However, there has been a split between rulings at different universities on whether a student's health records and information fall under HIPAA or FERPA. They can only fall under one or the other, not both.
The HIPAA Privacy rule explicitly excludes from its purview records that are considered education records under FERPA. However, it should also be noted that FERPA specifically states that: the term “education records” does not include “records on a student who is eighteen years of age or older, or is attending an institution of postsecondary education, which are made or maintained by a physician, psychiatrist, psychologist, or other recognized professional or paraprofessional acting in his professional or paraprofessional capacity, or assisting in that capacity,
and which are made, maintained, or used only in connection with the provision of treatment to the student, and are not available to anyone other than persons providing such treatment, except that such records can be personally reviewed by a physician or other appropriate professional of the student's choice.”
In light of ongoing differences of opinion that exist regarding whether student health records at college or university health centers are governed by HIPAA, FERPA, or state privacy laws, health care providers who provide care to older adolescents and young adults on college campuses should consult with their general counsel on this issue.
There is an integral relationship among the legal provisions that pertain to consent, confidentiality, and payment in the delivery of health care services to adolescents. A source of payment is essential whether an adolescent needs care on a confidential basis or not. The issue is particularly critical for adolescents from low-income families or those who have no family to support them, and even more critical when a young person needs confidential care.
If an adolescent does not have available a source of free care or access to insurance coverage, legal provisions that allow adolescents to give consent for care and to expect confidentiality protections to apply to that care do not actually guarantee access. Financing for the care is therefore an essential element of confidentiality. Some of the state minor consent laws specify that if a minor is authorized to consent to care, it is the minor rather than the parent who is responsible for payment. In reality, however, few, if any, adolescents are able to pay for health care “out of pocket,” unless there is a sliding fee scale with very minimal payments required.
There are some federal and state health care funding programs that enable minors to obtain confidential care with little or no cost to them. Most notable is the federal family planning program funded under Title X of the Public Health Services Act. As significant a role as these programs play, they do not ensure access to comprehensive health services for teens. The financing available through insurance is therefore all the more important.
Adolescents are uninsured and underinsured at higher rates than other groups in the population, although young adults are uninsured at the very highest rates. Those adolescents and young adults living below the poverty level are at the greatest risk for lacking health insurance. Private employer-based coverage for adolescents has declined, but coverage through public insurance programs such as Medicaid and the State Children's Health Insurance Program (SCHIP) has increased. Enrollment of all adolescents who are eligible for these programs would significantly decrease the number of uninsured adolescents and have great potential for improving their access to care. Again, specific requirements—for eligibility and benefits—vary by state, so practitioners need to be familiar with their own state's programs.
However, even when adolescents are covered by public or private insurance, they may be unable to access that coverage without the involvement of their parents. Therefore, more than other age-groups, they may be dependent for specific services on care that is provided at no cost or based on a sliding fee scale through federal-funded and state-funded programs. Although the legal framework for financing of health care services is undergoing dramatic changes in general and not only for adolescents, it is nevertheless essential that practitioners familiarize themselves with all potential options whereby adolescent health services can be paid for, including the available sources of public and private funding.
It is only through a comprehensive understanding by practitioners of the legal framework for adolescent health services, including the relationships among consent, confidentiality, and payment issues, that adolescents' access to the health care they need can be ensured. Extensive resources are available on Web sites and in peer-reviewed journals to assist practitioners in becoming familiar with this legal framework.
The author gratefully acknowledges the support of the Annie E. Casey Foundation, Brush Foundation, Compton Foundation, George Gund Foundation, and Moriah Fund. The views expressed are those of the author alone. The author also gratefully acknowledges the research assistance provided by Elisha Dunn-Georgiou, JD, MS.
Please note that neither this chapter nor the Appendix represents legal advice. Health care practitioners are reminded that laws change and that statutes, regulations, and court decisions may be subject to differing interpretations. It is the responsibility of each health care professional to be familiar with the current relevant laws that affect the health care of adolescents. In difficult cases involving legal issues, advice should be sought from someone with state-specific expertise.
http://www.cahl.org. The Center for Adolescent Health & the Law (CAHL) is a national nonprofit legal and policy organization that promotes the health of adolescents and their access to comprehensive health care.
http://www.healthlaw.org. The National Health Law Program (NHeLP) is a national public interest law firm that seeks to improve health care for America's working and unemployed poor, minorities, the elderly, and people with disabilities, including children and adolescents.
http://www.youthlaw.org/. The National Center for Youth Law (NCYL) is a national nonprofit law office serving the legal needs of children and their families. http://www.abanet.org/child/home.html. The American Bar Association (ABA) Center for Children and the Law is a national project of the American Bar Association that works to improve children's lives through advances in law, justice, knowledge, practice, and public policy.
http://www.healthprivacy.org. The Health Privacy Project is dedicated to raising public awareness of the importance of ensuring health privacy in order to improve health care access and quality, both on an individual and a community level.
http://www.hhs.gov/ocr/hippa/. The Office for Civil Rights (OCR) in the U.S. Department of Health & Human Services is the agency charged with implementing the HIPAA Privacy Rule.
http://www.guttmacher.org. The Guttmacher Institute is a nonprofit organization focused on sexual and reproductive health research, policy analysis, and public education.
http://www.familiesusa.org. Families USA is a national nonprofit, nonpartisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.
http://www.cbpp.org. The Center on Budget and Policy Priorities (CBPP) conducts research and analysis to inform public debates over proposed budget and tax policies and to help ensure that the needs of low-income families and individuals are considered in these debates. CBPP also develops policy options to alleviate poverty, particularly among working families.
http://www.aap.org. The American Academy of Pediatrics includes on its Web site a broad array of position papers and policies that are relevant to legal issues in the health care of adolescents.
http://www.adolescenthealth.org. The Society for Adolescent Medicine includes on its Web site numerous position papers and statements that are relevant to legal issues in the health care of adolescents.
References and Additional Readings
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Bellotti v. Baird, 443 US 622 (1979).
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Brindis C, Morreale MC, English A. The unique health care needs of adolescents. Future Child 2003;13:117.
Carey v. Population Services International, 431 US 678 (1977).
Cheng T, Savageau J, Sattler A, et al. Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students. JAMA 1993;269:1404.
Council on Scientific Affairs, American Medical Association. Confidential health services for adolescents. JAMA 1993;269:1420.
Crosby MC, English A. Mandatory parental involvement/judicial bypass laws: do they promote adolescents' health? J Adolesc Health 1991;12:143.
English A. Treating adolescents: legal and ethical considerations. Med Clin North Am 1990;74:1097.
English A. Reproductive health services for adolescents. Critical legal issues. Obstet Gynecol Clin North Am 2000;27:195.
English A. Financing adolescent health care: legal and policy issues for the coming decade. J Adolesc Health 2002; 31(suppl):334.
English A, Ford CA. The HIPAA privacy rule and adolescents: legal questions and clinical challenges. Perspect Sex Reprod Health 2004;36:80.
English A, Kenney KE. State minor consent laws: a summary, 2nd ed. Chapel Hill, NC: Center for Adolescent Health & the Law, 2003.
English A, Morreale MC, Larsen J. Access to health care for youth leaving foster care: Medicaid and SCHIP. J Adolesc Health 2003;32(suppl):53.
English A, Morreale M, Stinnett A. Adolescents in public health insurance programs: Medicaid and CHIP. Chapel Hill, NC: Center for Adolescent Health & the Law, 1999.
English A, Simmons PS. Legal issues in reproductive health care for adolescents. Adolesc Med 1999;10:181.
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Ford CA, English A. Limiting confidentiality of adolescent health services: what are the risks? JAMA 2002;288:752.
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Ford C, Millstein S, Halpern-Felsher B, et al. Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care.JAMA 1997;278:1029.
Ford CA, Mitchell RD. Discussing confidentiality with adolescent patients: strategies used by clinician members of the Society for Adolescent Medicine. J Adolesc Health 2000; 26(2):129.
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Morreale MC, Dowling EC, Stinnett AJ, eds. Policy compendium on confidential health services for adolescents, 2d ed. Chapel Hill, NC: Center for Adolescent Health & the Law, 2005.
Morreale MC, English A. Eligibility and enrollment of adolescents in Medicaid and SCHIP: recent progress, current challenges. J Adolesc Health 2003;32(suppl):25.
Morreale MC, Kapphahn CJ, Elster AB, et al. Society for Adolescent Medicine. Access to health care for adolescents and young adults: position paper. J Adolesc Health2004;35:342.
Morrissey JM, Hoffman AD, Thrope JC. Consent and confidentiality in the health care of children and adolescents: a legal guide. New York: The Free Press, 1986.
Planned Parenthood of Central Missouri v. Danforth, 428 US 52 (1976).
Planned Parenthood Federation of America, Inc. Major U.S. Supreme Court rulings on reproductive health and rights. Available at http://www.ppfa.org/pp2/portal/files/portal/medicalinfo/abortion/fact-abortion-rulings.pdf. 1965–2003.
Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 US 833 (1992).
Rainey D, Brandon D, Krowchuk D. Confidential billing accounts for adolescents in private practice. J Adolesc Health 2000;26:389.
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Teare C, English A. Nursing practice and statutory rape: effects of reporting and enforcement on access to care for adolescents. Nurs Clin North Am 2002;37:393.
Tinker v. Des Moines Independent School District, 393 US 503 (1969).