Donna Lieberman, JD Director of the NYCLU Reproductive Rights Project
Jessica Feierman, University of Pennsylvania JD Candidate
Abstract: There is significant evidence that both physicians and adolescents are uninformed of adolescents' legal rights to confidential reproductive health care. When young people are aware of their right to confidentiality and assured that physicians will respect that right, they are more likely to seek care. Restricting adolescent reproductive health care places added stress on young women, delays treatment, and may even lead young women to resort to dangerous alternatives. The legal framework governing minors' ability to obtain confidential health services is key. This paper will identify recent threats to adolescent reproductive health care, analyze informed consent and confidentiality in the context of adolescent care, review minors' constitutional rights, and review the legal framework governing adolescent care in New York State as one example.
Adolescents, more than members of any other age group, often do not get the health care they need. According to the American Medical Association and the Society for Adolescent Medicine, a primary reason is that adolescents fear disclosure of confidential information to their parents or guardians. Adolescence is a critical developmental stage characterized by rapid physical and emotional changes and a desire for greater autonomy. Teenagers today confront difficult choices at younger ages than ever before. As they negotiate the passage from childhood to adulthood, they are exposed to serious risks, including premature pregnancy, human immunodeficieny virus (HIV) and sexually transmitted diseases (STDs), drugs, and alcohol abuse.
Many young people will avoid getting needed reproductive health care unless they are assured of confidentiality; fear of parental disapproval or abuse, and general societal hostility toward adolescent sexual activity compound the problem. In one survey, 17% of adolescents reported that they had not sought medical treatment because they feared parental knowledge. Another survey found that only 15% of adolescents would seek treatment for STDs if they had to inform their parent, but when assured of confidentiality, 65% would seek care. When parental consent laws for HIV testing were removed in Connecticut in 1992, one clinic reported that the rate of adolescent testing increased 44%. Forty-five percent of adolescent clients surveyed in one Planned Parenthood clinic had not informed their parents that they received contraceptive services. More importantly, if parental notification were required, 80% of those clients said that they would not use clinic services, while less than 1% said they would stop having sex.
Both physicians and adolescents are uninformed of adolescents' legal rights to confidential reproductive health care. Only 21% of physicians in family practice, internal medicine, obstetrics/gynecology, and pediatrics reported discussing confidentiality with all adolescent patients, and 31% acknowledged that they did not know the management guidelines for treating 15-year-olds with STDs. Seven percent of young people in one survey, reported that their physicians had revealed private information to their parents without their permission. Adolescents are also unlikely to identify their physicians as confidential sources of care; only 5% did so in one study, while 64% named Planned Parenthood as a source of confidential care.
When young people are aware of their right to confidentiality and assured that physicians will respect that right, they are more likely to seek care. Accordingly, while urging providers to encourage family communication, the American Academy of Pediatrics has concluded that mandating parental consent for abortion increases medical risks and delays treatment.
This paper will identify recent threats to adolescent reproductive health care, analyze informed consent and confidentiality in the context of adolescent care, and review minors' constitutional rights. To illustrate these issues, the paper will then focus on the legal framework governing adolescent care in New York State.
The Law: Help or Hindrance?
The legal framework governing minors' ability to obtain confidential health services without parental involvement is key. It can facilitate access or create barriers. When driven by public health goals and a respect for individual rights, the law facilitates patient access. Such was the case in the early days of the HIV epidemic, when the New York State legislature expressly authorized minors to consent to confidential HIV tests11 and mandated "accurate ... and ... appropriate" HIV education in the public schools. But the law may also be used to erect barriers.
Abortion is a case in point. The 1973 US Supreme Court decision in Roe v Wade gave constitutional protection to a woman's right to decide whether or not to terminate a pregnancy. But in the intervening years, the anti-abortion backlash has led to myriad state and federal restrictions designed to make abortion inaccessible. Twelve states (Idaho, Indiana, Kansas, Louisiana, Mississippi, Nebraska, North Dakota, Ohio, Pennsylvania, South Carolina, South Dakota, and Utah) have imposed waiting periods for abortion that may be medically harmful.
While these restrictions affect all women, they have a disproportionate impact on teenagers, who often lack the resources to overcome obstacles. Teenage girls as a group have also been a prime target for opponents of abortion. Twenty-nine states prohibit minors from getting abortions without involving parents or judges. These restrictions place added stress on young women, delay treatment, and may even lead young women to resort to dangerous alternatives. Some states also deny young people access to information they need to avoid unintended pregnancy and STDs.
In today's political climate, strong public support for abortion rights and sex education is often eclipsed by those who oppose sex education, contraception and abortion and by societal hostility to adolescent sexual activity. Indeed, the 105th Congress seriously considered two bills that would impede minors' access to reproductive health care. One would make it a federal crime for an adult including -- grandparents, older siblings, and clergy members -- to accompany a teen out of state to get an abortion when she had not complied with her own state's parental involvement laws. Another would end confidential family planning services for teenagers under the Title X family planning program. Since 40% of sexually active teenagers rely on Title X clinics, this would seriously undermine adolescent access to family planning services. While both these bills were defeated, we anticipate similar proposals in the 106th Congress.
On the state level, 405 restrictive measures, some directed at teenagers, were introduced in state legislatures in 1997. Texas, for example, passed a bill prohibiting the use of state funds for adolescent family planning and STD prevention services without parental consent. The Texas Supreme Court dismissed a legal challenge because the state was planning to make confidential services available using federal funds. Alaska, Florida, Idaho, Kentucky, Maryland, Georgia, and South Carolina rejected proposals to prohibit adolescents from obtaining family planning and related services without parental involvement.
Moreover, the law on minors' access to health care is often the product of a complex patchwork of statutes, court decisions, medical ethics, and practice that leaves young people and the professionals who work with them understandably confused. For example, the legal framework governing abortion in New York incorporates federal constitutional law, state statutes, and state common law; New York statutory law explicitly requires that the performance of an abortion operation on a minor be kept confidential, and the US Supreme Court regards parental consent requirements unconstitutional unless they permit a judicial bypass procedure. Because our legal system is multi-layered, it often leaves medical professionals and young people confused and with questions.
Consent and Confidentiality
Informed consent and patient confidentiality are "a cornerstone of the physician-patient relationship and 'essential to a patient's trust in a health care provider.'" With extremely limited exceptions, health care providers must obtain informed consent prior to treatment. And information about the treatment cannot be disclosed without the permission of the person who consented to care, unless otherwise specified by law.
Generally, to give informed consent the patient must understand the condition, the nature and purpose of the proposed and alternative treatments, and the predictable risks and benefits of the proposed and alternative treatments (including the option of no treatment at all). Failure to obtain informed consent and unauthorized disclosure of patient information constitute professional misconduct that may give rise to professional discipline, malpractice or even criminal liability.
When the patient is an adolescent, the patient's informed consent is not necessarily sufficient. Under the common law, parents are generally authorized to give informed consent for the medical care of their minor children and are generally entitled to obtain their medical records. Practitioners may sometimes withhold information from the parent who has consented to treatment when disclosure would be harmful to the patient or to the parent-child relationship.
In many cases, however, adolescents who are capable of giving informed consent may make independent medical decisions and are entitled to keep their treatment confidential, even from their parents. Their ability to do so derives from judicial recognition of minors' constitutional right to privacy independent of their parents, the increasing acceptance of the mature minors doctrine, and legislated exceptions driven by public health concerns. A minor's right to consent to confidential care depends on the type of treatment (e.g., family planning or treatment of STDs), the status of the adolescent (e.g., married, pregnant, emancipated), the medical circumstances (e.g., emergency), and where the adolescent lives (e.g., with a parent, on her own, in foster care).
Constitutional principles regarding reproductive health care establish a minimum standard for access. Beyond that, laws governing minors' rights to confidential health vary from state to state. In addition, common law principles regarding emergency treatment and "the mature minors" doctrine have evolved in many states and may enable providers to treat minors when parents or guardians are unavailable. Common law principles derive from judicial decisions rather than statutes. In some circumstances, federal law guarantees young people access to services, and state laws typically define categories of minors who can make independent health care decisions. States may also define categories of services that all or some adolescents may obtain confidentially without parental permission. Thus, despite obstacles, practitioners have the authority in many circumstances to treat minors who are capable of giving informed consent and who cannot or will not involve a parent.
Minors' Constitutional Rights
The US Supreme Court has recognized that minors, like adults, have a constitutional right to privacy that guarantees them some measure of autonomy to make decisions about their reproductive health. For this reason, states cannot impose blanket parental consent or notification requirements on minors seeking abortion or contraception. To withstand constitutional scrutiny, a law requiring parental consent or notification for a minor's abortion must ensure a expeditious and confidential bypass so that the minor can avoid parental involvement if she a) has the "maturity and information to make her abortion decision" independently or b) can demonstrate that the abortion is in her best interest. The maturity prong of the bypass comes from the common law mature minors doctrine discussed below.
The state has even less interest in regulating access to contraception than to abortion. In a 1977 decision striking down a New York statute that prohibited the sale of condoms to minors under 16, the US Supreme Court ruled:
Since the State may not impose a blanket . . . requirement of parental consent on the choice of a minor to terminate her pregnancy, the constitutionality of a blanket prohibition of the distribution of contraceptives is a fortiori foreclosed.
In the same 1977 decision, the Court flatly rejected the notion that the state could legitimately impede access to contraceptive services as a means of discouraging sexual activity. The courts have consistently rejected laws that would prohibit minors from obtaining contraception without parental consent. Federal laws and regulations complement minors' constitutional right to privacy by guaranteeing them access to confidential family planning services. Eligible minors are entitled to confidential family planning services under both the Medicaid law and Title X of the Federal Public Health Service Act.
State Common Law Protections
The contours of the mature minors doctrine and the rights it vests in adolescents vary from state to state. Several state courts have recognized that minors may possess the maturity and intelligence requisite to make certain decisions before they reach the official age of majority. Typically the determination of whether an adolescent qualifies as a mature minor depends on such criteria as the minor's age and emotional and intellectual maturity, the medical condition, the risk and necessity of the proposed treatment, and whether it would benefit the minor. State legislatures have also codified at least a limited application of the doctrine, either explicitly or by implication. Minors in 23 states and the District of Columbia have an explicit right to access to family planning without parental consent. In Delaware and Hawaii, minors must be 12 and 14, respectively, to obtain these services confidentially on their own. No state currently prohibits minors from receiving family planning without parental consent. Similarly, adolescents can consent to certain STD and HIV services in every state; however, several states set a minimum age ranging from 12 to 16. Sixteen states do not guarantee confidentiality, and Iowa mandates disclosure of a positive HIV test.
Applying the maturity standard in the context of malpractice actions, some state courts have approved physicians' decisions to treat mature minors based on informed patient consent and without prior judicial approval. Some courts have also drawn on this doctrine to permit a mature minor to refuse life-sustaining medical treatment. West Virgina's Supreme Court of Appeals ruled that physicians must consult mature minors prior to determining whether to administer or withhold treatment, including "Do not resuscitate" orders. Even courts that have denied minors' requests to reject life-saving treatment have implicitly accepted the mature minors doctrine. In In re Long Island Jewish Medical Center, for example, a New York court rejected a 17-year-old's request to be spared a blood transfusion because he lacked the requisite maturity to qualify as a mature minor. Whether or not a state recognizes the mature minor doctrine, a practitioner may be professionally obliged to obtain the consent of both the mature minor patient and a parent.
For the adolescent patient there is a world of difference between consenting as a mature minor in the doctor's office, as is often the case, and having to obtain a court order finding that the teenager is mature and capable of giving informed consent for an abortion.
The Society for Adolescent Medicine (SAM) and the American College of Obstetricians and Gynecologists (ACOG) recognize the importance of both patient confidentiality and dialogue between adolescents and their parents., ACOG and SAM urge physicians to discuss confidentiality with their adolescent patients and their parents or guardians, including the limits of confidentiality, as for example, in cases of suspected abuse or physical danger. They also suggest a written or verbal agreement between the physician, patient, and parent outlining the doctor-patient relationship. Clarifying the importance and conditions of confidentiality enhances the doctor-adolescent patient relationship without devaluing the parental role.
Adolescents' Access to Care in New York State
The balance of this article will focus on New York State as a case study. The constitutional principles and ethical standards discussed are generally applicable, and the statutory and common law exceptions to parental consent requirements often have counterparts in other states. This discussion is meant to inform health care providers of the broad issues and encourage them to become familiar with the laws in their own states. Several resources survey the relevant state laws pertaining to minors and reproductive health care. The Alan Guttmacher Institute summarizes key state laws regulating minors' access to reproductive health care, and the National Abortion and Reproductive Action League (NARAL) publishes a state by state report. State health departments, ACLU affiliates, and Planned Parenthoods should also be a source of information.
For the most part, New York State law and policy facilitate minors' access to care. In practice, minors may consent to a wide range of medical services. Moreover, state law explicitly protects confidentiality for minors with regard to some forms of care, including abortion and STD and HIV testing and treatment.
Categories of Minors Who May Consent to Care
In New York, as in most states, a minor is a person under the age of 18. Minors are denied certain legal rights, like the right to enter into contracts, because they are deemed incapable of making the requisite judgments. Nonetheless, certain categories of minors can consent to all, or almost all, of their own health care. As with anyone seeking treatment, a minor who cannot adequately understand the risks and benefits of treatment cannot consent to care, regardless of legal status. New York State law explicitly permits minors who are pregnant, married, or have children to make medical decisions.
Pregnant minors may consent to medical, dental, health, and hospital services "relating to prenatal care". Virtually any medical treatment that a pregnant woman receives may be regarded as "relating to prenatal care." For this reason, a pregnant teen may consent to all, or almost all, health care services on her own behalf.
Like adults, married minors may make all of their own health care decisions. Minors who are parents may also make all of their own health care decisions. Additionally, minor parents may consent to health services for their children.
Emancipated and mature minors may also make their own medical decisions. However, the absence of a clear legal framework in New York may discourage practitioners from confidentially treating minors in these categories. Emancipation is defined as the renunciation of parental rights. When that happens, the parents may no longer make decisions for their child, and the child is entitled to some, but not all, adult rights and privileges. While few New York cases on emancipated minors and health care have been heard, each case that touched on the issue has supported the right of an emancipated minor to consent to health services. The precedent set by current New York practice also indicates that an emancipated minor may make health care decisions.
No statutes or procedures clearly define how to determine whether a minor is emancipated; however, a minor in New York who is living as if emancipated is generally considered to be emancipated. Typically, a minor is considered emancipated if he or she is married, in the armed services, or economically independent and has established a home. A minor who seeks emancipation is also deemed emancipated when a parent has failed to fulfill parental support obligations; however, a parent's failure to provide support does not involuntarily emancipate the minor.
In the absence of a clear emancipation procedure, legal organizations and advocates for youth, such as The Door's Legal Services Center in New York City, sometimes provide letters of emancipation. These letters indicate to health care providers, school administrators, or other adults that the minor meets the legal criteria for emancipation and should therefore be accorded the right to consent to health care, the right to retain his or her wages, and certain other rights that are typically reserved for adults. A minor who meets the criteria for emancipation but cannot obtain necessary services should be able to obtain a court order of emancipation.
In New York, a mature minor - one who is emotionally and intellectually mature enough to give informed consent - may be allowed to make health care decisions without parental consent. New York law is somewhat ambiguous on this point, however, because the appellate courts have never clearly defined the criteria for determining whether a minor is mature or definitively established that a mature minor may obtain medical care without parental consent. Lower courts are divided on whether the mature minors doctrine determines a minor's right to make medical decisions. Additionally, the New York State Bar Association has not "located a single reported case where a physician was held liable for providing medical treatment to a mature minor without parental consent."
Types of Care to Which Minors May or May Not Consent.
In New York, a minor who understands the risks and benefits of proposed and alternative treatments may generally make health care decisions without parental consent for reproductive health care, including family planning, abortion, pregnancy-related care including prenatal care, care during labor and delivery, and care for STDs.
Minors' rights to confidential family planning services without parental notification or consent. are protected under both the US Constitution and federal law (see above). Even a minor in foster care with a Catholic agency must be afforded access to reproductive health information and services, including contraception. School-based clinics, however, may require parental consent for family planning and other services that young people have access to elsewhere on their own. In New York, a pregnant minor may consent to medical services relating to prenatal care, labor, and delivery as well. Once a child is born, the minor parents may make medical decisions for themselves and their child. As with any other medical treatment to which minors consent, all information about prenatal care, labor, and delivery services must remain confidential.
A minor in New York may obtain an abortion without parental involvement. While the US Supreme Court has ruled that a state may require parental involvement in a minor's abortion decision, New York State has never enacted such a law. Therefore, a pregnant teen in New York may consent to her own abortion, as long as she understands the risks and benefits of the procedure and its alternatives.
New York State law expressly forbids the release to parents of medical records pertaining to a minor's abortion unless the patient consents. However, the insurance company practice of sending home descriptions of benefits could jeopardize the confidentiality of minors who seek coverage through a parent's plan. New York is one of 15 states where abortions are covered by Medicaid. New York minors who obtain Medicaid certification without their parents' knowledge are somewhat protected from involuntary disclosure because official Medicaid guidelines instruct providers not to contact the parents of pregnant teenagers and to offer pregnant adolescents the option of receiving Medicaid communications at an address away from home. Even in New York, however, minors who receive Medicaid benefits may face additional risks in the rare case when Medicaid seeks reimbursement from a responsible parent.
As a matter of practice, most providers encourage teenagers to involve their parents or other supportive adults in abortion decisions. Most teens (54% of teenagers under 18 and 74% of those under 16) discuss abortion decisions with their parents, even when such communication is not mandated by law, and those who do not often have compelling reasons, including, among others, a reasonable fear of abuse or concern about aggravating family problems.
Because sterilization is permanent and because of the history of coercive sterilization practices for minority and poor women, the laws governing sterilization are much stricter than those applicable to other reproductive health services. There is a moratorium on federal and state funding for the sterilization of anyone under 21 years old, and sterilization may not be performed on anyone under 21 years of age in New York City.
In New York, as in most states, a minor may consent to confidential testing or treatment for an STD, although some STDs must be reported to public health officers. The New York City Department of Health encourages patients to inform their sexual partners when they have been infected with STDs, but some must also be reported, either anonymously or directly, to all sexual partners. When a patient opts for the Department of Health to notify the sexual partners, the DOH may not reveal the patient's name (telephone communication, L. Hoback, NYS Department of Health, March 15, 1996).
New York State law differentiates HIV from other STDs and provides special confidentiality mechanisms to protect people infected with HIV from discrimination. The Public Health Law requires written, informed consent before an HIV test can be administered. Because the capacity to consent to such testing is determined without regard to age, a minor has the right to decide to be tested. Like an adult, a minor is also entitled to anonymous testing in which the patient's name is not revealed and the test results can never be traced to the individual.
Minors are also entitled to consent to treatment for HIV without parental consent. State law defines capacity to consent in this context as: "an individual's ability, determined without regard to the individual's age, to understand and appreciate the nature and consequences of a proposed health care service, treatment, or procedure, or of a proposed disclosure of confidential HIV related information, as the case may be, and to make an informed decision concerning the service, treatment, procedure or disclosure" (emphasis added). This reference to "treatment" implies that a minor may consent to HIV/AIDS treatment, even though other sections of the statute do not specifically authorize physicians to treat a minor patient who is capable of giving informed consent. Moreover, under the emergency care doctrine, a physician may also treat a minor for HIV without parental consent when the physician concludes that requiring the minor to speak with the parents would delay treatment and increase the risk to the minor's health. As a result, many practitioners do allow HIV-infected minors to consent to their own care when they cannot or will not seek parental consent.
Because people with HIV often face discrimination, HIV-related information (any information about whether a person has had an HIV-related test or has HIV infection, an HIV-related illness or Acquired Immune Deficiency Syndrome (AIDS) is strictly protected from disclosure. HIV-related information may not be disclosed to a minor's parents when the minor is capable of consenting to his or her own care or "the disclosure would not be in the best interest" of the minor. A health care provider must record any decision regarding parental involvement and the reason for the decision in the minor's medical record.
Information may be involuntarily disclosed to a minor's parents only if a minor is incapable of consenting to his or her own HIV-related care. Even then, the provider may release information to the person authorized to consent to the minor's care only "when necessary and after appropriate counseling." While minors in foster care have the same rights to make HIV testing or treatment decisions as others, their medical records are subject to significantly broader disclosure -- to the foster care agency, prospective foster or adoptive parents, and law guardian.
Health care providers who disclose confidential HIV-related information without signed releases under circumstances other than those described above may be liable for civil and/or criminal penalties.
Adolescents need access to health care in order to preserve their health and well-being. Parental consent requirements and a lack of confidentiality seriously impede access. When adolescents and the professionals who work with them are not aware of minors' rights, young people are needlessly discouraged from seeking care. Medical providers, school-based professionals, peer educators, and advocates who know the scope of minors' rights to obtain confidential medical care can make a significant contribution to the health and well-being of adolescents.
The authors would like to acknowledge the assistance of Jana Lipman, Sherrill Cohen, and Talcott Camp.