The Experts Weigh In — A Teen With HIV

Last week we presented a case — an ethical dilemma — involving Lisa, a young teen who is about to become sexually active. What Lisa doesn’t know is that she acquired HIV at birth and has been taking medication which she believes are vitamins up to this point. Her parents have withheld this information in hopes if making her life as normal and carefree as possible.

Read last week’s post here.

Your comments were insightful and smart, and raised issues we hadn’t thought about. The original presentation was followed by the commentaries of two experts, one a practicing pediatrician and one an ethicist with a large healthcare provider. We held off posting them to give you time to formulate your own thoughts. Here they are.

Lekeisha Terrell, MD, is a practicing pediatrician in Indianapolis, IN

This case raises important issues: Lisa has the right to know she is HIV positive; her boyfriend has the right to know he is exposed to HIV; and her parents have the right to confidentiality about their HIV status. The physician’s goal is to do what is in the best interest of the patient. In this case, Lisa should be informed of her HIV-positive status. After the medical interview, her physician should be able to assess whether she is a mature minor and intellectually able to understand the information presented to her.

Lisa is an adolescent transitioning from childhood to adulthood. During this maturation process, physical and intellectual changes allow adolescents to make autonomous decisions. The physician has a moral and ethical obligation to discuss health and illness with a child patient and is supported by U.S. laws, policies, and previous court decisions. The American Academy of Pediatrics recommends that all adolescents and some school-age children know their HIV status. Disclosure improves adolescent care by increasing the bond of trust. It promotes patient autonomy by showing respect for an adolescent’s emerging capacity to understand and by increasing an adolescent’s participation in his or her own care.  However, disclosure may cause Lisa to distrust her parents because they did not tell her sooner.

Lisa was born with HIV. This means that at least her mother and possibly her father are HIV positive. Both her mother and father have a right to confidentiality about their HIV status, and informing Lisa could break their confidentiality. It is Lisa’s parents’ choice whether to discuss with her how their HIV was acquired.

This disclosure may cause Lisa emotional pain. If her HIV status continued to be hidden, she would be sheltered from the stigma attached to being HIV positive. She would not wonder if people were talking about her, afraid to touch her, or making up stories about how she acquired HIV. However, the consequences of not knowing could be life-threatening for her or for someone close to her. If, for example, she decides to stop taking her “vitamins” because she thinks they aren’t necessary, her HIV may progress faster to AIDS. If she were to pass HIV on to a sexual partner, the result might be mental distress, pain, and distrust in the medical profession for keeping her status secret. Finally, if she gets pregnant and is not taking her “vitamins” correctly, she might pass HIV on to her offspring. The consequences of not disclosing her status to her clearly outweigh any benefits.

Lisa’s boyfriend also has a right to know Lisa’s HIV status in order to make a decision about becoming sexually active with Lisa, and her physician has a moral obligation and a legal duty to warn him of possible exposure to HIV. One way to accomplish this is by informing Lisa of her HIV status so she can have a conversation with her boyfriend about it. This conversation may cause them to implement safer sex practices than they might have used if neither of them knew her HIV status. Lisa said she was in love with her boyfriend; she wouldn’t want to harm him if she can avoid it.

In pediatric and adolescent health care, much of the decision-making is family-centered, so it is best for Lisa’s physician to involve her parents if he can. He should ask her parents if they would like to tell her first or if they would like him to inform her. He should also avoid breaking Lisa’s confidentiality and trust by telling her parents that she is thinking about having sex. Hopefully, he can work out a compromise that all parties can live with.

 

Carol Bayley, PhD, is the Vice President of Ethics and Justice Education at Catholic Healthcare West, San Francisco.

This case seems to hold a set of forced choices. Should the doctor’s duty to protect the best interest of his patient cause him to risk a lawsuit from her parents if he discloses to Lisa her HIV status? Should her parents’ view of Lisa’s best interest prevail over her doctor’s? Should their conviction that Lisa and her boyfriend are not mature enough to have sex silence the doctor as he helps Lisa prepare for it, ready or not? Is it really true that either the doctor asserts his duty to protect Lisa by marching back into the exam room to break the news or he caves in to pressure to go along with her parents’ deception?

The case also indicates the physician’s multiple moral responsibilities. He is responsible to the patient for her welfare; to her parents, who may be manifesting denial and grief; to society to contribute to the trust of the profession; and even to others, like Lisa’s boyfriend, who might be harmed by her ignorance. Prioritizing those responsibilities is a challenge.

Often in cases where a choice is not obvious we look to the law for precedent. The law can indicate society’s common settled morality, even if it doesn’t always perfectly reflect it. Here, legal doctrines can help us think, at least analogically. One doctrine is that sometimes the best interests of children supersede their parents’ custodial rights over them. A long line of cases has followed principles established in 1944’s Prince v. Massachusetts to allow a hospital to administer a life-saving blood transfusion to a child over the objection of Jehovah’s Witness parents. Another doctrine is the doctor’s duty to warn a third party of potential harm, even if it compromises confidentiality. The seminal case for the latter is 1976’s Tarasoff v. Regents of the University of California. Taken together, these can justify the physician’s plan to disclose to Lisa her HIV status over her parents’ objections, both to advance her own health and well-being and potentially to protect her boyfriend. Failing to do either could have legal ramifications for the doctor.

We should also be concerned about the long-term health of Lisa’s relationship with her new doctor. Honesty promotes trust, which could be damaged when Lisa eventually learns that her doctor hid her HIV status from her. The doctor’s relationship with Lisa is not merely mediated by her parents, but exists in its own right. Teenagers need to learn to become responsible, sexually active adults, and Lisa’s doctor can help, but his role will be undermined if Lisa sees him as her parents’ ally first and her own second.

But we are still left with the choice of whether to tell Lisa her HIV status. Certainly, the doctor must tell the parents that it is his duty—perhaps even his legal duty—only to treat Lisa with her consent, and that consent is meaningless without information of exactly the sort they wish to withhold. At the same time, he can assure the parents that this kind of conversation will likely require more than one visit. He should also encourage them to talk frankly about sex with their daughter. Teens who are “mature enough” to have sex often delay it; it’s the others we worry about.

In the meantime, when the doctor returns to the exam room, he can advise Lisa on the importance of beginning good safe sex habits, including condom use.  He might also indicate that she will benefit from more conversation about this important step in her life and encourage her to talk with her parents about it in anticipation of the next visit. And the next visit, either with Lisa or with her parents alone, should be scheduled soon.

Let us know how these expert opinions sit with you. How would you go about balancing Lisa’s right to know and her parents’ right to privacy?

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Rachel Zahn, MD is a pediatrician turned health writer who had three kids during medical school and pediatric training—crazy, huh?


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