CASE 18

Juana Caban

A 21-year-old Puerto Rican woman who is pregnant and HIV-positive

Lisa Rucker, MD, Nadine T. Katz, MD, and Nicholas E.S. Sibinga, MD

Albert Einstein College of Medicine, Bronx, NY, USA

Educational Objectives

TACCT Domains: 2, 3, 4, 6

Case Summary, Questions and Answers

Juana Caban is a 21-year-old Puerto Rican American female who lives with her mother, Isabella Caban. Juana discovers that she is pregnant using a home pregnancy test and makes an appointment at the obstetrical clinic at the local hospital several weeks later. She is seen by Dr. Paul Graham, a first-year resident in obstetrics and gynecology. Juana is found to be 5 months pregnant and has not received previous prenatal care. This is her first pregnancy. She has been previously healthy, takes no prescribed medications, and denies smoking, alcohol, or drug use. Juana attended public high school, graduating three years ago. She works as a cashier and parttime stocker in a small neighborhood grocery store while she considers whether or not to attend college. Dr. Graham, whose parents are both physicians and who is now the father of an infant son himself, discusses the difficulties in finding the best private day care setting for her baby and asks her what the father of the baby does for a living.

1 What might we erroneously assume about Juana’s social and economic network?

What an individual comes to see and accept as “traditional” and normative is a product of his/her personal social context. Dr. Graham appears to be from a stable home with two parents and an upper middle class background. This frame of reference may have led to inaccurate assumptions that the baby’s father is involved and that Juana has disposable income for day care. Assuming that the father is still a part of the patient’s life and that he will be present at the birth, help raise the child, and provide financial and emotional support may lead to errors of omission in obtaining the patient’s history.

Instead, it would have been much more helpful for Dr. Graham to have asked a series of questions (shown in Table 18.1) that would aid in clarifying the patient’s attitude toward the pregnancy, her social support and need for additional assistance, as well as screen for possible abuse or the need for sexual safety planning.

In fact, the father of Juana’s baby is no longer involved with Juana and has not participated in any of the pregnancy decision making, nor will he be providing any financial support.

2 Describe how you would obtain information about Juana’s support system for her pregnancy, birth, and care of the baby?

A high percentage of all births in urban settings are to single, teenage mothers, and as a result, the mother of the patient (eventual grandmother) may play a more active role in raising the child. Many single, pregnant women are in their teens and the daughter of a teenage mother is at greater risk of becoming a pregnant teenager.

Table 18.1 Questions for physicians to ask pregnant women

Source: Ana Núñez, MD, Drexel University School of Medicine, and Darwin Deen, MD, Sophie Davis College of Biomedical Science, 2009. Used with permission.

· How do you feel about this pregnancy?
· Who have you told about the pregnancy?
· Is the baby’s father still part of your life? (If not, consider whether she was raped and always consider sexually transmitted diseases.)
· Is the baby’s father aware that you are pregnant?
· Do you think he will be involved with the baby?

Because Juana will need support through her pregnancy, the physician needs to find out about her mother and other family support. There are many kinds of families beyond the nuclear, heterosexual, two-parent home. Physicians need to explore these areas by asking, “Who lives at home with you? Is your family able to help you with this pregnancy? If yes, who all do you mean (asking for names and family roles) could be involved?”

In this case, because Juana lives with her mother, it would be helpful to ask her questions directly to get an understanding of her relationship with her mother. Begin with, “Have you told your mother you are pregnant?” If Juana’s mother is going to be involved in her pregnancy, it would also be important to have her come along to the prenatal visits. In terms of care for a new child, the grandmother’s role may become more important in Juana’s day-to-day activities. Important details of Juana’s life, such as who will take care of the baby, the role of the grandmother, and her eligibility for publicly funded programs, are critical facts that will influence her health care needs and the availability of resources.

Because of universal screening recommendations during pregnancy, Juana consented to be tested for HIV. Her HIV test was positive, and her viral load was very high, indicating active HIV disease. Her HIV diagnosis is discussed and appropriate retroviral treatment is begun. She returns by herself for her 6-month prenatal visit, and the pregnancy is progressing well without other complications. Juana did tell her mother, who is 45 years old, that she is pregnant, and her mother is now looking forward to being a grandparent. However, Juana decided not to share her HIV diagnosis and treatment details with her because of her mother’s low opinion of people who have AIDS. Her mother has said, “I know parents of too many drug users and promiscuous children who have contracted AIDS. Those bad parents are responsible for their children’s risky behaviors and I am quite proud of my only daughter, who has remained sensible and disease-free.” Juana states jokingly, “I know she would throw me out onto the street if she ever found out I was HIV-positive.”

3 If Juana has HIV, does that mean her newborn baby will be born HIV-positive?

Not necessarily. Current treatment options for HIV-positive, pregnant patients vary and depend on how far along the woman is in the pregnancy. Asymptomatic women in the first trimester of pregnancy may consider delaying treatment until after 10 to 12 weeks. [After the first trimester, minimum treatment should include azidothymidine (AZT)]. Other factors, such as CD4 count, viral load, and drug resistance, should be considered to determine the best treatment option for an individual patient. Although preliminary teratogenicity data are reassuring, the use of other anti-HIV medications in pregnancy must be carefully monitored due to the limited knowledge about the safety profile of these drugs for the mother and fetus.

Treatment during labor and delivery is recommended, as the major risk for transmission of HIV from mother to neonate occurs around this time. Currently, the most common course of therapy is the three-part AZT regimen. It includes AZT (100 mg five times per day, 200 mg three times per day, or 300 mg two times per day) starting at 14 to 34 weeks, intravenous AZT during parturition, and treatment of the baby for 6 weeks with oral AZT. Although the exact mechanisms of vertical transmission are unknown, treating the mother and baby in this manner reduces the transmission rate to 5–8%. (Many women continue their other anti-HIV medications during labor and should discuss this with their providers.)

4 What are the concerns and fears Juana may have regarding her diagnosis? Is it acceptable for Juana to exercise autonomy by withholding information from her mother?

Although a diagnosis of HIV infection or AIDS may not carry a stigma for Juana and young people her age, it may still mean great social stigma for those of the generation of Juana’s mother. Juana’s joking assertion that her mother would throw her out was a reflection of a deeper and certainly understandable fear about her mother’s possible reaction and the loss of her support and affection. However, despite Juana’s fears about the potential reaction of her mother, it would be important for Juana to consider initiating a conversation with her mother about these issues since it is very likely that Mrs. Cabon will discover that Juana is taking medications for HIV infection. As a prelude to this conversation with her mother, it would be useful for the physicians to have a discussion with Juana pertaining to her beliefs about the HIV illness and its treatment. In addition, helping patients disclose their HIV status is usually a process and having Juana connected with a multidisciplinary team experienced in care of HIV-positive patients may increase her support and resources.

Ultimately, as an adult, Juana clearly has the legal right to make medical decisions regarding herself and her unborn child without informing her mother. A patient decision such as this can illicit reactions of anger and frustration in the physicians. In managing these emotions, it is important for the caregivers to recognize any personal biases they might have regarding HIV-positive patients and caring for an unwed mother.

Although Juana was compliant with her treatment regimen and had no undue adverse effects from the medication, her viral load remained very high. As she approached her ninth month of pregnancy, Dr. Graham informed Juana that, with a high viral load, the baby’s risk of HIV infection would be decreased if a cesarian section were performed. Juana responded, “I want to do whatever is best for the baby, but I don’t want to be cut. I also don’t want the C-section because, if I have it, my mother might figure out I am HIV-positive.” After some further conversation with Dr. Graham, Juana says, “I might consider the C-section if you promise to tell my mom there is some other reason for the C-section. The baby is too big or something like that.” The obstetrics team meets to discuss Juana’s case.

5 Is the obstetrics team being asked to lie? Is the obstetrician’s recommendation for C-section in the best interest of Juana? Who is (or should be) the patient in this case?

The physicians here are faced with sorting through an ethically complex situation in which there is apparent conflict between several professional and legal obligations. On one hand, Juana has the right to make her own medical decisions (autonomy) and the expectation that her conversations with the physicians are privileged and confidential (confidentiality). However, the physicians are required to be truthful (veracity) and act in the best interest of the patient (beneficence). The issue of beneficence becomes even more challenging in that there are two patients (Juana and her baby) whose interests need to be attended to, but which may conflict.

In terms of disclosure to the mother, the legal issue is straightforward. Federal regulations [i.e. those based on the Health Insurance Portability and Accountability Act (HIPPA] are in place to insure the privacy and security of patient information. These regulations prohibit the release of patient information without the consent of the patient (although they are not meant to be a barrier to emergent or appropriate care). Consequently, in this case, Mrs. Caban is not the patient and the patient’s wishes for confidentiality should be respected. However, given the lack of a social network and support beyond her mother, it might be in Juana’s best interest, and that of her baby, to inform her mother and bring her fully into the circle of care. Physicians are expected to be honest, truthful, transparent, and open, and thus to lie to the mother about the indication for the cesarean would violate a core physician value. But, if this would enable Juana to consent to the surgery, and thus give the baby the opportunity to have the best outcome, might this be one of those rare instances when deception by the physician would be acceptable?

A case such as this is filled with subtleties and nuances, and the context is always important. However, if Juana does continue to decline a cesarean section, then the most ethically defensible approach is to accept her decision and use available medical therapy to prevent transmission of HIV to the infant; make appropriate, good faith efforts to protect her privacy; and decline to be willfully or knowingly deceptive.

6 What response might you make to Juana’s request if you were the obstetrician or PCP?

After clarifying the issues among themselves, the care team should continue to engage Juana in supportive, respectful, and patient discussion about her concerns and fears, ensuring that the physician recommendations have been presented in a clear and understandable matter. Offering to have Juana speak to her mother in the office, with the physician present, may provide a level of safety and comfort that will enable her to overcome her fears. Enlisting the assistance and advice of trained clinicians experienced in the care of HIV-positive patients may also be helpful. Although the physicians may disagree, ultimately the decision to have the cesarean section, or disclose her diagnosis, is Juana’s. She, however, should understand that, although every effort will be made to maintain the privacy of her diagnosis, the staff will not allow itself to be put in position where they will be made to lie. Instead, if asked directly about the reason for the cesarean section, the care team will decline to answer the question and direct the question to Juana.

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