A 15-year-old girl (we'll call her "Cindy") comes to your office with an atypical chief complaint: "I want to talk to
the doctor." With her mother outside in the waiting room, she tells you that she is sexually active and missed her last period.
She's concerned that she might be pregnant. And she doesn't want her mother to know.
For some teenagers, the hardest part of being pregnant, or thinking that they are, is telling their parents. If a physician
cannot assure confidentiality about pregnancy (or about any other sensitive health issue), an adolescent may refrain from
obtaining health care to keep her parents from learning of her condition.1,2 Adolescents are more likely to seek care in a setting in which they believe their privacy will be maintained, but state
and federal regulations, ultimately, determine the degree of privacy that a patient is afforded.
Despite the 1978 recommendations by the Task Force on Pediatric Education to improve training for adolescent health care,
many pediatricians and ob/gyns continue to lack confidence in their ability to address adolescent issues and often do not
provide comprehensive care to this age group.3,4 A study of the availability of adolescent health services and of confidentiality in primary care practices in the Washington,
D.C., metropolitan area found that pediatric practices were less likely than family medicine and internal medicine practices
to offer adolescents services such as contraception and pregnancy testing.5 They were also less likely than family medicine practices to offer adolescents confidential care.5 Pediatricians participating in the survey commonly cited lack of equipment and expertise, inadequate staffing, and low patient
demand as reasons for not offering the services. While ob/gyns routinely offer contraception and pregnancy testing, they too
are often not familiar with the issues of confidentiality that are so critical to success in treating teens.
Although the teen birth rate has declined steadily since 1991, about 800,000 teenagers become pregnant each year, and about
400,000 give birth.6 When confidentiality is a barrier to a pregnant minor seeking care, the health consequences can be significant.7 Pregnant teens are the least likely of all age groups to get early and regular health care and are at greater risk of complications
such as premature labor, anemia, and hypertension.8 Like many adults, a pregnant teenager often has poor eating habits; she may diet, neglect to take a daily prenatal vitamin,
or smoke and take drugs—further increasing the risk of having a low-birthweight infant (less than 5 lb) or one born with
other health problems. A low-birthweight infant is 20 times more likely than one of normal weight to die in the first year
of life.9
The physician who is approached by an adolescent in a scenario like the one involving Cindy can make the clinical diagnosis
easily enough. The challenge arises in responding to the adolescent's request for confidentiality. Understanding the rights
of the adolescent patient and applying them appropriately in the primary care setting can reduce a barrier to care in this
population.
What are the rights of an adolescent to confidential health care?
The Society of Adolescent Medicine (SAM) and the American College of Obstetricians and Gynecologists (ACOG) have called for
health providers to make their patients aware of the requirements of confidential care and to strike the often difficult balance
between maintaining an adolescent's confidences and involving responsible adults when necessary.10,11
Table 1. Some conditions commonly considered "medically emancipated"
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In general, an individual's right to control information about her health care is linked to that person's right to consent
to the care itself. As a rule, children younger than 18 years are not allowed to consent to medical treatment; their parents
(or legal guardian) make all medical decisions and, therefore, generally have the right to access the health information that
results from that treatment.
That rule notwithstanding, public policy for more than three decades has reflected the understanding that many minors will
not seek health services if they must first inform their parents. All 50 states have enacted legislation that entitles adolescents
to consent to treatment, without parents' knowledge, to one or more "medically emancipated" conditions (Table 1). For example,
[27 states explicitly allow minors to consent to contraceptive services without their parents' consent or knowledge. The laws
vary from state to state and are, sometimes, complicated. Laws regarding HIV, for example, may involve more stringent privacy
rules.]
"Medically emancipated conditions" should not be confused with the term "emancipated minor." State law provides for a legal
proceeding that allows a person under the age of majority (18 years in most states) to petition the court for the full rights
of an adult—i.e., become an emancipated minor. This granting of adult rights is based on the maturity of the minor and the
minor's need for adult status. Conditions that make it inappropriate for the minor's parents to retain control over the minor
may include marriage or service in the armed forces.
When state law does not require consent of a parent or guardian for medically emancipated conditions, the consenting minor,
not the parent, controls the health-care decisions and access to health information related to that care. Therefore, [a minor
seeking treatment for an emancipated condition has three options:]
- Consent to treatment and withhold medical information pertaining to the emancipated condition from her parents. The physician
may not disclose such information to the family without the minor's permission.
- Involve a parent in these health decisions, yet retain the right to control the health information. Here, the minor has the
benefit of a parent's counsel and advice, but still ultimately makes the health-care decisions and thus controls the resulting
information.
- Have the parent continue to control all the health-care decisions and the resulting health information.
Where state law does not require disclosure to parents, the parents may agree beforehand to a confidential relationship between
the minor child and the physician for medical conditions not included on the state's list of emancipated conditions. The child
would then be able to consent to treatment for an injury sustained at or away from school, for example, or for symptoms of
an illness that the child fears might upset his parent. In this case the parent relinquishes access to health information
related to that confidential relationship, giving the child an even higher level of privacy than provided by state law. In
states where disclosure to parents is mandatory, however, such physician-parent-patient agreements would generally not be
permitted.
Because laws regarding an adolescent's right to confidentiality vary by state, clinicians are obligated to understand the
law in the state where they practice medicine. Ob/gyns may find help in this regard from ACOG, specialists in adolescent medicine,
or the state bar association.
How does HIPAA affect the adolescent's right to confidentiality?
The Health Insurance Portability and Accountability Act of 1996 (HIPAA), a federal act that came into final form in August
2002, is intended to assure that patients' private health information is kept confidential and that information disclosed
for purposes other than health care is minimal.
Much like state law, the principle underlying disclosure under HIPAA is that, if a person has the right to make a health-care
decision (i.e., to consent to treatment), she has the right to control information that results from that decision. HIPAA
recognizes that parents generally have the right to make health-care decisions for their child and, therefore, to control
the so-called protected health information (PHI) associated with those decisions. In those situations where state law allows
a minor to consent to a particular health service, and the minor does so, HIPAA generally allows the minor to control the
PHI associated with that service or treatment.
Confidentiality and the adolescent patient
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However, when state law specifically addresses disclosure of a minor's PHI to a parent or guardian, state law preempts HIPAA,
regardless of whether that law prohibits, mandates, or allows discretion about a disclosure.12 [If, for example, state law requires parental notification of a minor's health information (such as about abortion), HIPAA
does not protect adolescent confidentiality. But HIPAA does allow the treating physician discretion to deny the parent access to a minor's PHI (even where state law would dictate disclosure) when, in the physician's judgment, such
access constitutes an imminent threat to the minor or another person.] Similarly, when state law prohibits disclosure of PHI
to a parent without the minor's consent, HIPAA nonetheless allows the provider discretion to disclose if she believes that
doing so will prevent or diminish an imminent threat to the minor or another person.
When state law is silent or unclear regarding control or disclosure of an adolescent's PHI for medially emancipated conditions,
the default under HIPAA is for maintaining confidentiality. Again, in situations in which the physician believes that an imminent
threat to the minor or another person can be diminished or prevented, she may disclose PHI.13 In the absence of such a threat, HIPAA does not allow a provider to disclose without the minor's permission.
Cindy is in the 10th grade, doing well in school, and hopes to become a police officer someday. She usually has menstrual
bleeding every 28 days, and her period was due 3 weeks ago. She has had some nausea in the mornings but no other complaints.
She notes that her boyfriend, a 16-year-old high school track star, usually uses a condom. They plan to get married someday.
Her physical examination is within normal limits.
You have known the patient's mother for some years. She is a schoolteacher who has been very diligent in taking care
of her daughter. You have not met the girl's father, but he has seemed like a reasonable person when you've talked to him
on the telephone in the past. Your patient says that her parents are "very religious" and worries that they will throw her
out of the house if they find out she's pregnant.
What is the next step?
For some adolescents, the threat of being "thrown out of the house" is a real one, and many teenagers are subject to physical
or emotional abuse by a parent or an intimate partner. Indeed, in studies, as many as a third of pregnant adolescents report
being abused during pregnancy.14,15
What is the difference between confidential testing and anonymous testing?
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In Cindy's case, the physician correctly asks her why she fears telling her parents. Based on her response and his knowledge
of her parents, he should next try to discuss with her how likely it is that her parents will be unhelpful.
Testing is also warranted. In addition to conducting a urine pregnancy test, screening for sexually transmitted infections
(STIs) is appropriate in cases of suspected pregnancy.16 Nearly half of all high school students have had sex, and 20% of 12th graders have had four or more sexual partners.17 Each year, 2.5 million teenagers acquire an STI, and many of them remain asymptomatic.18 Girls 15 to 19 years of age have the highest rates of gonorrhea among women of all age groups, and, because of their increased
cervical ectopy, teens are at increased risk of Chlamydia trachomatis infection, the most common sexually transmitted bacterial disease.19 Even a subclinical STI can progress to pelvic inflammatory disease, with its high complication rate of infertility, chronic
pelvic pain, and tubal pregnancy.20
Chlamydia and gonorrhea can be tested for simultaneously. Nucleic acid amplification tests (NAAT) or nucleic acid probe testing
can be used on swabs from the urethra or the endocervix. As C trachomatis is an obligate intracellular bacteria, it is important that epithelial cells rather than exudates comprise the sample; vaginal
swabs are not recommended. NAAT assays can also be used on first void urine samples, with sensitivity only slightly less than
samples obtained from the cervix or urethra, but with the advantage of patient comfort and ease of collection.21
Screening for STIs also includes serologic testing for HIV, syphilis, and hepatitis B. Written consent for HIV testing is
required and can be obtained from the adolescent without parental notification or consent. [Indeed, all 50 states allow for
confidential STI testing. Note: "Confidential" is not synonymous with "anonymous" (see the box).]
Hepatitis B virus (HBV) is often forgotten as an STI, but the prevalence of this virus is as high as 10% among populations
with high-risk sexual behaviors, including sex without condoms and sex with multiple partners. The effectiveness of the hepatitis
B vaccination is 90% to 95% after three doses. If, however, the patient's vaccination status is unclear, or the patient is
immunocompromised, you may obtain hepatitis B surface antigen antibody titers to ensure immunity. If the findings are negative,
reimmunization with a series of three vaccines is appropriate.
Some sexually active teenagers should be screened for cervical cancer with Pap testing. The sexually transmitted human papillomavirus
is found in the cervix of 15% to 38% of sexually active adolescent girls and has been implicated as an etiologic agent in
90% of cervical cancers.22 Recently updated recommendations suggest that screening begin within 3 years of sexual debut, or by 21 years of age in a
woman who has delayed first sexual intercourse. Standard Pap testing should occur annually, although newer, liquid-based preparations
may allow for testing every other year.23
What issues does billing raise?
Although you, as the health-care provider, have some control over the medical record, parents are entitled to review the details
of health insurance billing if they are financially responsible for the care rendered. Adolescents who seek health care either
without insurance or outside their parents' insurance plan will likely face unaffordably high payments, which may force them
to forgo care.
Even though states recognize situations in which it is appropriate for minors to consent to medical treatment, provisions
are rarely included in statutes for making that care financially accessible. In Florida, for example, Statue 384.30(2) reads
"[the] fact of consultation, examination, and treatment of a minor for sexually transmissible disease is confidential and
... shall not be divulged in any direct or indirect manner, such as sending a bill for services rendered to a parent or guardian
..." While adding a measure of confidentiality, the law falls short of providing payment for those services.
The federal Medicaid program is an exception. For those adolescents covered by Medicaid, the statute requires that family
planning services be provided (and paid for) for sexually active minors who desire them on a confidential basis. A few states
include services beyond family planning. In California, the MediCal program called Sensitive Services (also known as Minor
Consent Services) provides health care for residents between the ages of 12 and 21 who want to receive services without parental
consent. Payment is provided for services related to pregnancy, family planning, abortion, testing and treatment for STDs,
HIV testing, mental health, and substance abuse.
Physicians who are committed to providing comprehensive health care to adolescents can minimize problems related to billing
by having a written policy regarding confidentiality and teenagers. They can review this policy and the challenges of providing
confidential health care with patients and their parents during pre-teen well-child visits—before such services may be needed.
[Focus the discussion on helping the parent understand the benefits of a confidentiality agreement:] The teenager may seek
more preventive health education and will have a safe, accurate, and trusted source of health information in addition to the
parent. It is important that the parent understand that you are not usurping parental authority but rather working for the
shared goals of health, safety, and wise decision-making on the part of the adolescent. While parents may initially feel they
are being asked to relinquish control, many will eventually understand that such an approach can help their child. Some parents
may even be willing to make agreements about payment for services, with access to any medical information being controlled
by the minor child. Parents can authorize health insurance payment without seeing the diagnosis or the lab tests that were
ordered.
Physicians who choose to provide more limited care to adolescents can still help ensure greater access to health services
by offering referrals to a practice, a specific specialist, the health department, or a clinic proficient in providing the
needed care.
You tell Cindy that you share her concerns about pregnancy and that, furthermore, many sexually active teenagers have
an STI without knowing it. You recommend testing her blood and urine (and a gynecologic exam) and provide pre-test counseling
and screening for HIV, syphilis (by rapid plasma reagin [RPR] testing), and HBV infection. You recommend that her boyfriend
obtain similar tests, and urge condom use for every sexual encounter.
You remind Cindy about your previous pledge of confidentiality (except in cases of intended violence or risk of suicide),
but also explain the many benefits of her maintaining an open relationship with her parents—including emotional and financial
support. You offer to be present if she discloses to her parents, or to tell her parents yourself. She is still concerned
about her parents' reaction, though, and does not want them to know. She consents to a pregnancy test in your office, but
not to STI testing after you explain that the billing records will reveal that such testing was performed.
What will you tell her mother?
Many parents are eager for the physician to discuss topics such as sexual activity and drug use with their teenager. They
readily agree that confidentiality is an important aspect of good health care and counseling. But most parents also feel strongly
that they have a right to know about important events in their child's life. As discussed, most state laws provide parents
with the right to know about all health conditions except in very specific situations such as pregnancy and infection with
a STI.
In this case, the law provides Cindy with the right to confidential health care regarding her possible pregnancy. This holds
true even if the parents ask direct questions, such as ["Is my daughter pregnant?" The key to responding to such questions
is understanding that you do not have to answer "Yes" or "No." Indeed, lying to the parents will destroy your credibility
with them and provide a poor example for the adolescent patient.] Instead, you can remind the parent of the office's policy
on confidentiality and that the parents agreed to such a plan. You can explain that it is your expert medical opinion that
protecting the patient's confidentiality is in their daughter's best interests. You can encourage parents to discuss their
concerns with their daughter.
Before speaking to the parent, ask the patient what she would like you to say to the parent. This provides an opportunity
for you to make it clear that you will not lie to the parent. It also provides the patient with some time to think about what
she will say, now that she is clearly informed of what you intend to share (and not share) with the parents.
The pregnancy test is positive. Cindy is crying, but she does not want to disclose the results to her parents. You comfort
her and ask if she has someone to confide in, such as clergy, extended family, or close family friends. She says she can talk
with her aunt, and she promises not to hurt herself. You remind her about the dangers of drinking and smoking to the fetus.
You briefly describe her options (adoption, raising the child, termination of pregnancy) and schedule a follow-up appointment
for the next day for further discussion.
Her mother has learned from previous visits that you will not disclose confidential information, but she is visibly worried.
You remind her about the importance of confidentiality, and you reassure her that your role is to provide the best health
care to her daughter.
When and how do you discuss options for the pregnant adolescent?
Adolescents who are pregnant may choose to complete the pregnancy and raise the baby, complete the pregnancy and give the
baby to a family wanting to raise a child, or terminate the pregnancy. Some experts recommend discussing these options with
the patient before doing the pregnancy test.24,25 For the adolescent who turns out not to be pregnant, a discussion before the results are known emphasizes the real risks
of unprotected sexual intercourse. For the adolescent who has just learned she is pregnant, the news is likely to evoke extreme
emotion, making it difficult to understand the medical options. Subsequent visits may be necessary.
Some ob/gyns may be uncomfortable discussing options available to pregnant teenagers. Nonetheless, it is essential that patients
have full medical information and understand the risks and benefits of each course of action. An ob/gyn who is unwilling or
incapable of providing appropriate counseling should refer the patient to another provider or specialist. Ob/gyns who do discuss
all options with their patients should note that most states require parental notification for minors who seek an abortion,
though the constitutional status of such laws is in question. [Thirty-one states require the notification and input of at
least one parent in a minor's decision about having an abortion. All states provide a mechanism for the minor to apply for
a judicial bypass when they do not want their parents to know about their decision.]
The next day Cindy returns with her mother and her aunt. She tells you that she is afraid to tell her parents, but understands
that they will know sooner or later. She asks you to tell her mother.
With Cindy and the aunt present, you explain to the mother what has happened. She suspected that her daughter was in
some kind of trouble, and she is obviously upset. She is relieved, however, to know the truth, and reassures her daughter
that her parents will not abandon her. You suggest that a member of the clergy or a family counselor may be helpful as the
family faces upcoming challenges. You make a note in the chart to follow up by telephone in 1 week.
Optimizing adolescent health
Providers who care for adolescents must recognize and respond to issues that lie at the intersection of medicine, law, and
ethics. Respecting an adolescent's right to privacy reduces one barrier to care. (In addition to concern over lack of confidentiality,
barriers to adequate health care for adolescents include costs, transportation, inconvenient office hours, and the inability
to consent to care.) When a patient trusts her physician, she is less likely to delay medical care and more likely to seek
reliable health information, both of which ultimately improve health. A physician who protects a patient's confidentiality
also contributes to her safety by being sensitive to potential harm in her environment and by helping the adolescent negotiate
the particular course she chooses.
Adolescent health concerns, such as pregnancy, can be emotionally difficult for patients, families, and providers. ACOG, The
American Academy of Pediatrics, the American Medical Association, and the Society of Adolescent Medicine, and have established
guidelines to help providers who care for this special group navigate the challenges they are likely to encounter.16,24,25
Providers must also be aware of state laws that govern issues of emancipation, consent, and privacy for adolescents who have
not reached the age of majority. HIPAA does not compel a higher standard of privacy for minors than what is mandated by states,
but it does allow physicians discretion—to disclose or to prevent disclosure—when there is an imminent threat to the minor
or another person.
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