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24 Yale J.L. & Feminism 303 Yale Journal of Law & Feminism 2012 Article WITH CHILD, WITHOUT RIGHTS?: RESTORING A PREGNANT WOMAN S RIGHT TO REFUSE MEDICAL TREATMENT THROUGH THE HIV LENS Michael Ulrich d1 Copyright (c) 2012 Yale Journal of Law and Feminism; Michael Ulrich ABSTRACT: In Doe v. Division of Youth & Family Services, 1 a hospital employee sought state intervention when an HIV-positive woman refused to comply with treatment recommendations during her pregnancy that would drastically reduce the chances of mother-to-child-transmission (MTCT), eventually triggering a lawsuit against the hospital. With an increase in the number of HIV-positive women becoming pregnant and the courts avoiding constitutional analysis of a woman s right to refuse medical treatment, there is a clear void where legal analysis is surely needed. This Article fills this void for the inevitable case where an HIV-positive pregnant woman s right to refuse medical treatment is weighed against the state interest in the fetus. Abortion case law recognizes and upholds the state interest in fetal life, but state interest in fetal health has yet to be established as a compelling interest which may override the constitutionally protected right of the woman. Meanwhile, compelled-treatment jurisprudence has unfailingly relied on protecting the potentiality of life. As such, this Article demonstrates that prior precedent demands a pregnant woman s liberty interest in bodily integrity be protected, as opposed to further relegating pregnant women into a group of second-class citizens whose right to refuse treatment is weakened by the mere fact of pregnancy. In ignoring prior jurisprudence, a court would sustain the stigma surrounding HIV and cause regression in education. Meanwhile, examining the issue through a public health lens reveals that a genuine interest in fetal health would support education rather than compelled treatment to ensure HIV-positive pregnant women are not driven from the health care system they clearly need. I. The Woman s Right to Refuse Medical Treatment 309 II. Defining the Contours of a Compelling State Interest 313 A. Abortion Doctrine 313 B. Compelled Medical Treatment Jurisprudence 316 C. Protecting Public Health The Force of Police Power No Reasonable Action 324 III. The Case Against Compelling Treatment 328 A. Fetal Life Versus Fetal Health 328 B. Words of Warning from Public Health 331 C. Relegating Pregnant Women to Second-Class Status 332 Conclusion 335 *304 HIV is the leading cause of death worldwide for women ages 15 to In the United States, despite overall incidences of HIV infection remaining stable, young women from racial minority groups are more likely to be infected than ever before. 3 Young women ages 13 to 39 account for approximately 64% of new HIV cases among women, with the youngest women in that age bracket accounting for more than a third of all new infections. 4 Racial minorities are disproportionately represented in these outcomes: nearly 80% of the cases in these age groups are African-American and Hispanic women. 5 Part of the explanation for this dramatic rise in infections for women, and young women specifically, is that heterosexual transmission is becoming an increasingly common cause of new HIV infections. 6 Women are physiologically more susceptible to HIV infection than men 7 and are, therefore, twice as likely as men to contract HIV from unprotected sex with an infected partner. 8 This medical fact helps explain why heterosexual transmission is the *305 primary method of HIV contraction for women. 9 Young women in particular are at risk, as nearly one-third of girls 14 to 17 reported a condom was not used in their most recent experience of sexual intercourse. 10 With an increased prevalence of HIV in women, and with young women specifically at risk, a number of legal and ethical questions arise about the care these women should receive if they become pregnant. Among the most important of these is how to reduce mother-to-child transmission (MTCT) of HIV. In the last two decades, rates of MTCT of HIV during pregnancy and birth have fallen as a result of the 076 Protocol. 11 In this three-step process, physicians administer the antiretroviral zidovudine, or AZT, to the woman at or after fourteen weeks of pregnancy, intravenously during delivery, and to the newborn for six weeks after birth. 12 When combined with elective cesarean section (c-section) deliveries and the absence of breastfeeding, MTCT of HIV falls to less than 2%. 13 But these and other recommended treatments are lengthy and cumbersome, and not all pregnant women will want or be able to undergo them. 14 In 2005, 92% of children under the age of 13 with AIDS were believed to have acquired HIV from their mother. 15 And while perinatal infections continue to occur across all racial subgroups, the majority of newly infected children are African-American. 16 These outcomes signal that many women are not receiving the kind of pre- and perinatal care necessary to prevent MTCT. A number of factors are likely in play. First, many patients receive health care from a fractured health care system that does not properly test for HIV, communicate the results to patients, and deliver the information and medical *306 care required to prevent transmission. 17 In some cases, providers perform routine HIV testing only for pregnant women who fall into a group they consider high risk. 18 Women who are not tested and those who seroconvert during pregnancy are therefore removed from the realm of MTCT treatment options. 19 Meanwhile, evidence suggests that there are significant breakdowns in communication between women with HIV and their physicians with regard to reproductive issues, with many never discussing the possibility of having children. 20 Women can also contribute to their susceptibility to these problems by delaying their entry into the health care system. 21 Fear of stigma and discrimination, barriers to care such as poverty or lack of insurance, and beliefs about their health, medications, and the health care system in general can delay HIV testing and proper care for women, especially minorities. 22 This means that HIV-positive women may not seek medical attention until after they are pregnant or show symptoms of the disease. 23 Those accessing care in the later stages of pregnancy can be equally problematic; for example, there is a rising number of teenagers who were perinatally infected and are nonadherent to their treatment regimens who then access care very late. 24 There also are various reasons why people living with HIV may decide to delay or avoid conventional therapies, including the long-term effects of treatment, side effects, or faith in alternative treatments. 25 And a pregnant woman may have even more anxiety about the drugs she puts into her body. 26 *307 With the constant advice that pregnant women avoid certain medications, drugs, alcohol, and specific foods, taking treatment to reduce HIV transmission can be psychologically taxing and can cause women to only partially adhere to the recommended regimen. 27 Furthermore, a woman may decline MTCT treatment because she has already used the drug therapy unsuccessfully. 28 In addition, some research finds that women who are knowledgeable about their condition and are aware of their low viral load may fear that the risk of toxicity is greater than the risk of transmission; it is apparent that the reasons for declining accepted medical treatment are virtually endless. 29 The case of an HIV-positive pregnant woman who declines to follow medical advice that would reduce the chance of transmitting HIV to her fetus raises important legal and ethical questions about the fetus that she plans to carry to term. For example, in Doe v. Division of Youth & Family Services, 30 a woman who was tested for HIV without her consent decided to halt her AZT treatment during pregnancy, refused treatment during delivery, and refused to permit hospital staff to administer the recommended treatment after birth. 31 For these reasons, the hospital placed the baby in protective custody so that hospital personnel could administer AZT. A court order returned the baby to the mother with mandatory in-home visits to ensure proper administration of treatment. 32 When the mother notified hospital personnel that she had ceased the AZT, the baby was again taken from her and the mother was charged with abuse and neglect. 33 The back-and-forth eventually came to an end when the baby tested negative for HIV five-and-a-half months after birth. 34 Ultimately, there was no forced medical treatment and this case was not decided on constitutional grounds, but cases concerning the possibility of forcing MTCT treatment upon an HIV-positive pregnant woman certainly would have to address competing interests of the woman and the state. As will be discussed in further detail below, 35 the state has a distinct interest in the life *308 of a fetus after viability, especially if the woman plans to bring the baby to term. In addition, there is a state interest in the potential costs to society associated with a baby with HIV. Some estimates have placed HIV treatment costs for an adult at approximately $2,100 per month. 36 Medication for infants with HIV typically costs 50-90% more than medication for adults despite using the same agents. 37 This can place a substantial burden on the health care system, with the federal government, states, and private insurers already seeing substantial increases in paying HIV-related medical costs. 38 Reports say that the cost of HIV care in the United States has increased significantly since the introduction of antiretroviral therapy (ART) and it is expected that the cost will continue to grow. 39 Given the high costs of caring for a child born with HIV and that HIV-positive women are disproportionately low-income, 40 it becomes apparent that the state could end up footing much of the bill. Cases of forced c-sections, blood transfusions, and other medical interventions for the benefit of the fetus illustrate that forced MTCT treatment is certainly a possibility. This possibility implicates the right to refuse medical treatment, which is a widely recognized constitutional right that should not be overshadowed by the state s interest in a fetus that will ultimately live. Considerations that apply when the fetus will or will not live as a result of the decision are not relevant here. 41 Thus, to focus on case law that trumpets the state s interest in fetal life would be misguided. Moreover, to eschew advances in medication and label HIV a death sentence would only add to the unwarranted stigma the disease still carries. A decision in the type of case that requires balancing the woman s right to refuse medical treatment and the state s interest in the fetus could have larger implications beyond HIV-positive pregnant women. To tip the scales toward state intervention would ultimately undermine an important right that should be protected, continue to place pregnant women in a class whose rights are not as protected as others, and potentially create a public health problem rather than solve one. Therefore, this Article seeks to fill the void of constitutional analysis in this type of case. In Part I, the legal foundation of a woman s right to refuse medical treatment is discussed. In Part II, it is juxtaposed against the state s *309 interest in the fetus. The state s interests are illustrated through case law concerning abortion, pregnant women refusing other medical procedures, and the authority of the state to protect the public s health. Each of the state interests and their legal underpinnings are analyzed to show that not only are these cases not analogous to the situation in question, but a proper reading of legal and ethical doctrines insists that a court respect the woman s decision. Finally, Part III discusses the state s interests in the potentiality of life versus fetal health, and examines the important policy factors that a court should consider when determining whether to force medical treatment on a pregnant woman on behalf of the state s interests. Unsurprisingly, these policy factors not only indicate that treatment should not be compelled, but suggest that to compel it would create more harm than good. I. The Woman s Right to Refuse Medical Treatment The right to refuse medical treatment was recognized as a constitutionally protected right in the historic case of Cruzan v. Director, Missouri Department of Health. 42 In this case, the Court recognized that this constitutionally protected liberty was one that had evolved from the right of self-determination, a right established and protected by the common law. In fact, the Court noted that no right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law. 43 The Court stated that this right to bodily integrity stemmed from the universally accepted doctrine of informed consent, meaning that every person of adult years and sound mind has a right to decide what will be done with his or her own body. 44 For if a person can grant informed consent, surely a person also possesses the right not to consent, that is, to refuse medical treatment, as well. 45 In Cruzan, the Court held that the Fourteenth Amendment provided a constitutionally protected liberty interest in refusing unwanted medical treatment. 46 The Due Process Clause protects not only a liberty interest in the life of a person, but also an interest in refusing treatment that would help sustain that life. 47 The legal right to refuse treatment is backed by the essential ethical principle of autonomy, which, at a minimum, protects the right of each person to make voluntary and informed decisions free from interference and *310 limitations by others. 48 Therefore, with informed consent, an individual should be free to decline any medical treatment that she decides she does not want. However, a person s liberty interest in refusing medical treatment is not absolute. In Cruzan, the Court also stated that even when dealing with a person s constitutionally protected liberty interests, a decisionmaker must balance such interests against relevant state interests to determine if a constitutional violation has occurred. 49 The four interests of the state that may provide a basis for limiting a person s right to refuse medical treatment are: the preservation of life, the protection of the interests of innocent third parties, the prevention of suicide, and the preservation of the ethical integrity of the medical profession In Washington v. Glucksberg, the Court utilized these limitations in order to differentiate between allowing a person to die by refusing medical treatment and facilitating someone s death by physician-assisted suicide. 51 Despite the Court finding that the Fourteenth Amendment did not offer a right to physician-assisted suicide, the Court reaffirmed the right to refuse unwanted medical treatment grounded in the Due Process Clause. 52 The Court found that this right to refuse medical treatment could objectively be categorized as a fundamental right deeply rooted in the tradition and history of the United States and implicit in the concept of ordered liberty. 53 Because this right could be described carefully, it satisfied the second prong of the Court s substantive due process analysis. 54 This long legal tradition of protecting the right to refuse medical treatment contrasts with physician-assisted suicide, which had never garnered such legal confirmation and, therefore, could not counter the weight of the state s interest in preserving life. 55 In another case, Vacco v. Quill, 56 the Court again isolated physician-assisted suicide from the protection of the Fourteenth Amendment. 57 In this case, which focused on the Equal Protection Clause, the Court did not find similarities between terminally ill patients on life support who could hasten death by refusing this medical treatment and those who wished to hasten death *311 by physician-assisted suicide. 58 Yet the Court made it a point to reassert that every competent individual maintains a right to refuse life-sustaining treatment regardless of physical condition. 59 This right has been upheld on the state level as well. In Stamford Hospital v. Vega, 60 the Connecticut Supreme Court found that Vega, a Jehovah s witness who had refused a blood transfusion on religious grounds, had had her fundamental right to refuse treatment violated when she was given the procedure in order to save her life. 61 Focusing on the common law right of bodily self-determination, the court found that if this right was to be respected, that respect had to extend even to situations of life and death. 62 Therefore, given Vega s clear and informed decision to refuse blood even in the face of death, the court found that the trial court and hospital erred in weighing the state s interest in preserving life more heavily. 63 In In re Hughes, 64 another case of a Jehovah s Witness refusing blood, the Superior Court of New Jersey held that the woman s rights were not violated only because there was some uncertainty as to her desires given the unexpected gravity of the situation and her husband s initial consent to the transfusion. 65 The court stated that competent people have every right to refuse medical treatment even to the point of sacrificing their own life as long as it is clear that that is what they truly wish. 66 Nevertheless, when balancing the state s interest in preserving life against the woman s right to refuse treatment, the court found that there was enough uncertainty due to factors such as the husband providing initial consent and declining to answer the judge when asked if additional blood should be refused to foreclose a clear violation. 67 Yet again, the court found it important to clearly state that the right to refuse medical treatment is protected not only by the common law, but also by the federal and state constitutions. 68 In a similar case, In re Martin, 69 the Michigan Supreme Court upheld the right to refuse even life-sustaining treatment for an incompetent person. 70 The court used a subjective standard, rather than what a reasonable or average person might choose, to effectuate a patient s right to self-determination. 71 The *312 court reasoned that the ethical basis of informed consent is rendered meaningless if after receiving all information necessary to make an informed decision, the patient is forced to choose only from alternative methods of treatment and precluded from foregoing all treatment whatsoever. 72 In this particular case, the patient was not allowed to refuse treatment because there was not clear and convincing evidence that this would be his decision were he competent. 73 However, in two cases concerning prisoners, their right to refuse medical treatment while incarcerated was recognized. In Thor v. Superior Court, 74 a quadriplegic refused medical treatment, which consequently created a substantial risk of death. 75 The Supreme Court of California held that a patient retains the right to make subjective treatment decisions if she understands the circumstances regardless of the wisdom or rationality of those decisions. 76 The court did not recognize an unqualified or undifferentiated policy of preserving life at the expense of personal autonomy, because if self-determination is to have any meaning, it cannot be subject to the scrutiny of anyone else s conscience or sensibilities. 77 Thus, despite a prisoner s rights being deprived in other situations, the court held that measures undertaken must be demonstrably reasonable and necessary, rather than a matter of conjecture. 78 With no overriding state interest, the
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