Fall, 2004
Question:An ethics consultation was requested when Ms. D., a 28-yearold HIV-positive pregnant woman, refused to take highly-active antiretroviral therapy (HAART). She was five months pregnant and was known to have had HIV for four years that had not progressed to AIDS despite taking no antiretroviral medication. When she became pregnant, her physician strongly urged her to begin
HAART and not to nurse the baby because both actions have been shown to significantly lower the incidence of maternal-to-fetal transmission of HIV. She read extensively about this issue and consulted Web sites and friends. She concluded that HAART had a greater chance of hurting her baby than helping it so she refused to start it. She also planned to nurse the baby. She reasoned
that she has been feeling well despite her physician's insistence that she take HAART for the last several years. The presentation of objective data of treatment outcomes was unsuccessful in persuading her because she believed that the medical-pharmaceutical establishment was behind the official treatment recommendations and she simply did not believe them. What would you suggest?
Response:This 28-year-old HIVinfected pregnant woman refuses to take HAART and insists on breastfeeding upon delivery, actions that are known to increase maternal-fetal transmission of HIV. When faced with patients who oppose medical
advice, clinicians routinely request psychiatry and ethics consultations. The psychiatrist's role is to help the clinicians access decision making capacity; the ethics consultant's role is to help identify and analyze the underlying values at stake and facilitate a decision that respects the values of the parties involved. We assume for the rest of this discussion that despite optimal communication and mediation, the conflict is irreconcilable. 1
This case raises two ethical questions: 1) should a competent pregnant woman be allowed to refuse lifesaving medical treatment for
her fetus? and 2) how does the delivery of the fetus change the moral question?
Can a competent, pregnant woman refuse medical therapy aimed at improving the health outcomes of her fetus? Decision making in health care is guided by the ethical principle of autonomy, the individual's right to self-governance, to make choices about if and when to accept medical treatment and to govern the course of that treatment. Beauchamp and Childress note that respect for a patient's autonomy, however, can be overridden by competing moral considerations: if an individual's choices endanger the public health or potentially harm those who are innocent, others can justifiably restrict the exercise of that individual's autonomy. 2 Some argue that the case turns on whether the fetus has moral rights. Some conservatives argue that the fetus claims moral rights from the moment of conception; others argue that it is not until after birth that the fetus has moral rights. We believe, however, that the critical issue is whether one can force unwanted treatment on a competent, pregnant woman.
The law takes this view. In a famous legal case in 1987, In re A.C., Angela Carder, a pregnant woman with end-stage cancer was forced by a court order to undergo an immediate caesarian delivery to save her fetus's life. Both she and the premature baby died shortly after surgery. Advocates for the surgery argued that since Ms. Carder faced imminent death, all efforts should focus on at least saving one life, that of the fetus. A subsequent appeal was lodged by the American Civil Liberties Union Reproductive Freedom project to the District of Columbia Court of Appeals which vacated the prior court decision, "concluding that in virtually all circumstances, the pregnant woman-not doctors or judges-should make medical decisions on behalf of herself and her fetus." 3 In the current scenario, Ms. D. remains in excellent health despite her diagnosis of HIV infection.
HAART often causes a variety of unpleasant side effects, and compelling Ms. D. to take HAART for the remainder of her pregnancy might impose significantly on her liberty. We believe that any attempts to force her to take HAART are unethical.
Upon delivery, the newborn is a separate and viable human being with moral, constitutional and legal rights. The principle of beneficence urges physicians "to prevent harm from occurring to others," to prevent this newborn from acquiring HIV infection. Administration of zidovudine within 48 hours after birth lowers the risk of maternal fetal transmission of HIV; 4 nevirapine reduces the risk of HIV transmission during the first 14 to 16 weeks of life by nearly 50 percent. 5 Therefore administering a zidovudine-nevirapine regimen to the newborn is the logical next step in his or her clinical care. Most important, giving the newborn HAART does not infringe on Ms. D.'s autonomy. It, however, infringes on Ms. D.'s parental rights.
In general, the medical and legal establishments recognize the rights of parents to make medical decisions on behalf of their children. However, when a parent's medical decision on behalf of her child is clearly not in the best interest of that child, parental authority may be suspended. In such cases, an independent, temporary guardian is sought to make medical decisions for the child. If a physician can show that a parent is endangering her child's life either by denying medical care or engaging in dubious health practices, the courts may rule in favor of the physician.
Our analysis of this case allows us to conclude that: 1) respect for this 28-year-old, competent, pregnant woman's autonomy dictates
that her physicians recognize her refusal to take HAART; and 2) after delivery, the pediatrician may seek judicial intervention to determine the best course of treatment for the newborn.
Mandy Garber, MD
Fellow in Medical Ethics Section of Palliative Care and Medical Ethics
Susan C. Hunt, MD
Professor of Clinical Medicine
Robert M. Arnold, MD
Leo H Criep Chair in Patient Care and Professor of Medicine
Division of General Internal Medicine University of Pittsburgh Medical Center
Outcome: HAART treatment was not forced on the pregnant woman. The patient did not take HAART and had a Caesarian delivery of
an apparently healthy infant. She decided not to breastfeed the infant or have him tested for HIV.
Footnotes
1 Stone D, Patton B, Heen S, Fisher R. Difficult conversations: How to Discuss what Matters Most.New York: Penguin Books,
2000. Given the irreconcilable nature of this conflict, the consultant's job will be to lay out to both parties what she or he believes the societal-ethical consensus is regarding these matters and to lay out for them what the societally acceptable mechanisms are for resolving the conflict.
2 Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press, 1997, p 126.
3 http://www.aclu.org/ReproductiveRights/ReproductiveRights.cfm?ID=9054&c=30
4 Wade NA, Birkhead GS, Warren BL, et al. Abbreviated regimens of zidovudine prophylaxis and perinatal transmission of the human immunodeficiency virus. N Engl J Med 1998;339:1409-14.
5 Guay LA, Musoke P, Fleming T, et al. intrapartum and neonatal single-dose nevirapine compared with zidovudine for prevention of mother-to-child transmission of HIV-1 in Kampala, Uganda: HIVNET
012 randomised trial. Lancet 1999;354:795-802.
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
