To tell or not to tell.
Article Type: Case study
Subject: HIV infection (Risk factors)
HIV infection (Diagnosis)
HIV infection (Case studies)
Pub Date: 05/01/2011
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2011 Hastings Center ISSN: 0093-0334
Issue: Date: May-June, 2011 Source Volume: 41 Source Issue: 3
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Accession Number: 268403514
Full Text: Lisa, a fifteen-year-old who recently moved to a different state, is being seen today for the first time by a new physician for a well-child check. He has not yet received her medical records from her former doctor.

In the exam room, she tells her new physician that she is healthy and takes no medications, only vitamins. She says she is an honors student, swims, and plays the violin. When the physician asks whether she is sexually active, she says no, but admits that she is thinking about it because she is in love with a boy from her old school. The two have been dating for a year and have recently started talking about having sex. The physician asks if they have talked about birth control, too. Lisa says they have and tells him that she started taking birth control pills a few months ago. The physician mentions the necessity of using a condom as well to guard against sexually transmitted diseases, but Lisa replies that they are both virgins, so neither has to worry about that.

Lisa's physician briefly leaves the room to let her get undressed for the exam. In the hallway, he sees Lisa's parents, who have accompanied her to the clinic. They say they must speak to him immediately and in confidence. He is surprised, but shows them to his office. There, they tell him that Lisa has congenital HIV and has been taking HIV medications that were prescribed by her former pediatrician. They also tell him that she does not know this--they have told her the medications are vitamins.

Without mentioning anything that Lisa told him in confidence, the physician tells her parents that he thinks it's time they told her she has HIV. Her parents get very angry. They insist that Lisa is still a child, and there is no reason to tell her yet. The physician mentions Lisa's boyfriend and the length of their relationship. He reminds them that Lisa's boyfriend will be at risk if he and Lisa have sexual contact.

Lisa's parents say they know all about her boyfriend, but they insist the relationship is not mature enough for them to be thinking about sex--all they do is play video games together. They adamantly disagree with the physician's view that Lisa is old enough to know her HIV status and say they will sue him if he tells her without their permission.

What should Lisa's physician do?

commentary

by Lekeisha Terrell

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. Research has shown adolescents have improved adherence to a plan and improved health outcomes when they are involved in their medical decisions. 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 ffirst 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.

commentary

by Carol Bayley

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--and almost always when the idea of a lawsuit is mentioned--we look to the law for precedent. But aside from precedent, the law can also 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 ffirst 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 least in some states, a parent must consent to treatment decisions for a minor child, except those pertaining to sexual independence. 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 can gently suggest that although her boyfriend says he's a virgin, there is no real way for her to know. 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.
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