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Case example
Thirty-seven-year-old Mrs. Grant is twenty-four weeks pregnant. She has been visiting her obstetrician, Dr. Perez, regularly for prenatal care. Her routine sixteen-week fetal ultrasound study revealed fetal anomalies that are consistent with trisomy 21, also known as Down syndrome. At that time, Mr. and Mrs. Grant refused amniocentesis (removal of fluid from the amniotic sac surrounding the fetus, for genetic testing). This testing would have confirmed or ruled out the suspected trisomy 21, but the Grants decided against it because they did not want to terminate the pregnancy, explaining that they would “go along with God’s plan.” Children with trisomy 21 have cognitive impairments of varying degrees, and they are at increased risk for cardiac anomalies and other physical impairments.
In her eighteenth week of pregnancy, Mrs. Grant developed polyhydramnios (excess accumulation of amniotic fluid), possibly as a result of the fetus’s genetic condition or of Mrs. Grant’s diabetes. After monitoring this condition for several weeks, Dr. Perez prescribed indomethacin, an oral medication that can decrease amniotic fluid volume. At her 24-week prenatal visit today, however, her amniotic fluid index (an ultrasonographic measure of amniotic fluid volume) was 36, well above the normal range of 10–22 for this gestational age. She is experiencing multiple symptoms, including shortness of breath when she is lying down, difficulty urinating, swelling of her legs and vulva, and abdominal pain. At her visit one week ago, Dr. Perez performed an amniocentesis to drain excess amniotic fluid, but that resulted in only a slight, temporary improvement in Mrs. Grant’s symptoms. Dr. Perez recommends another amniocentesis to drain amniotic fluid, but Mr. and Mrs. Grant respond with a request that Dr. Perez induce labor now. They state that they understand that delivery at this stage of pregnancy will result in a very premature infant who may not survive, but they do not want to prolong Mrs. Grant’s considerable pain and suffering or put her health at greater risk as a result of her condition. How should Dr. Perez respond?
What’s special about health care for pregnant women?
Health care for pregnant women is distinctive in at least one morally significant way. With the rare exception of treatment for conjoined twins, it is the only type of health care that has a direct effect on two human beings, the pregnant woman and the fetus she carries. Although the fetus is a distinct organism with its own genome, it is physiologically dependent on the pregnant woman, and so its health, growth, and development are affected by her state of health, her health-related behaviors, including nutrition, use of tobacco, alcohol, and drugs, and her use of prenatal health care. With greater appreciation of the influence of these factors on children’s health, and increased ability to monitor and treat the fetus in utero, contributors to the medical and bioethics literature in the 1980s began to call attention to the potential for “maternal-fetal conflict” during pregnancy, that is, circumstances in which the interests or desires of the pregnant woman appear to be contrary to the interests of her fetus.1
Some commentators object to use of the term ‘conflict’ in describing the maternal-fetal relationship.2 They observe that the interests of pregnant women and their fetuses are nearly always aligned; prenatal care, for example, is beneficial for both. They also point out that pregnant women typically adopt healthy behaviors, such as eating nutritious food and getting plenty of rest, because of their strong interest in protecting and promoting the health of their fetuses. Certainly very many if not most women make deliberate decisions and act accordingly during pregnancy to promote both their own health and the health of their fetuses. In some situations, however, the choices and actions of pregnant women endanger the health or the life of their fetuses. In these latter situations, the woman’s preferences and the interests of her fetus may indeed be in conflict. These situations are the subject of this chapter.
Are the moral issues posed by maternal-fetal conflict significantly different from those posed by the practice of abortion? A woman who chooses abortion generally does so because she judges that continuing a pregnancy, and thereby promoting the fetus’s presumed interest in survival, is contrary to her own interests. This is clearly one type of maternal-fetal conflict, and it is the focus of Chapter 13. If the desired resolution of a conflict between a pregnant woman and her fetus is abortion, moral analysis of that conflict can focus on whether abortion is permissible in that situation. But what if a woman continues her pregnancy, perhaps because she wants to bear and raise the child, or because she cannot secure the services of an abortion provider, or because the time period during which abortion is legally permitted has expired? Women who find themselves in these situations may make choices or engage in behaviors that endanger the health of their fetuses in the present, and of their children who will be born in the near future. If one concludes that both the fetus and the child after birth have the same strong right to life, that conclusion may provide sufficient reason both to prohibit most abortions and to constrain most actions of pregnant women that endanger their fetuses. If, however, the moral status of the fetus, during at least some part of its development, is judged to be significantly different from that of the newborn child, then the moral question of whether women’s actions may be constrained to protect children who will be born is also different from the questions of whether and when abortion is permissible. Stated another way, these situations pose the following question: When, if ever, is present intervention justified to protect a being who, even if it does not (yet) have full human moral status, in all probability will have that status in the near future? The remainder of this chapter will focus on situations in which abortion is not a desired or an available option, and so the fetus will very probably survive to delivery. To make this focus clear, in what follows I will refer to the fetus who will, with high probability, become a live-born infant as “the future child.”
Types of maternal-fetal conflict
Situations in which the interests of pregnant women and their future children come into conflict can be grouped into two broad categories. The first of these categories involves medical treatment decisions. Women may choose medical treatments that pose a risk of harm to their future children, or they may refuse treatments recommended in order to prevent harm to their future children. The second category involves pregnant women’s activities that may cause harm to their future children. Activities in this second category include the use of tobacco, alcohol, and recreational drugs, and employment that may expose women and their future children to teratogenic workplace chemicals (that is, chemicals that cause birth defects).
Medical treatment decisions
A wide variety of medical treatment choices may have an effect on the health of future children. The most commonly discussed of these choices in the bioethics literature is a woman’s refusal of treatments recommended to her either primarily or in part to benefit or to prevent harm to her future child. Examples include refusal of Cesarean section surgery for signs of fetal distress during delivery, refusal of intrauterine blood transfusions for severe fetal anemia that occurs when maternal antibodies destroy fetal blood cells, and refusal of intrauterine fetal surgery to correct severe congenital anomalies.3 Pregnant women may also choose medical treatments that pose a risk of harm to their future children. A pregnant woman newly diagnosed with a severe form of cancer, for example, may decide to begin a course of chemotherapy despite its potential for injury to her future child, now in its thirtieth week of gestation. Finally, pregnant women may not adhere to medical treatment instructions provided to them, often both for their own health and for the health of their future children. For example, a woman with diabetes may not follow a prescribed diet or take insulin during her pregnancy, thereby threatening her own health and that of her future child.
Perhaps the most well-known and widely cited example of a medical intervention ordered for the benefit of a future child is the 1987 case of Mrs. Angela Carder.4 Mrs. Carder was a 27-year-old woman with a long history of cancer who was pregnant with her first child. At twenty-six weeks gestation, she was admitted to the George Washington University Hospital with recurrence of cancer, and her medical condition rapidly worsened. Physicians informed her that she was near death, but that it might be possible to “intervene” to save her child. An emergency hearing was convened at the hospital, and a federal judge heard medical testimony that the fetus’s chances of survival, if delivered immediately by Cesarean section, were perhaps 50–60 percent. Because Mrs. Carder was intubated and sedated, her own treatment choices were unclear. She had previously said that she wanted the baby, but later appeared to refuse Cesarean surgery. Citing uncertainty about the patient’s wishes, the judge determined that the fetus’s interests in survival outweighed Mrs. Carder’s interests in bodily integrity and in avoiding a slightly hastened death, and he therefore ordered that the surgery be performed. The baby was delivered alive, but died within two and a half hours, and Mrs. Carder died two days later. An appellate decision three years later overturned the initial decision, ruling that the trial judge erred in not ascertaining whether Mrs. Carder had the capacity to make a decision about surgery. If she did have capacity, the appellate court asserted, her decision should prevail over any conflicting claims made on behalf of the future child.
Health-related behaviors
In addition to undergoing or refusing medical treatments, pregnant women may engage in a variety of other activities that adversely affect the health of their future children. Most notable among these activities are women’s use of tobacco, alcohol, and other addictive drugs during pregnancy. Use of these substances during pregnancy can cause premature delivery, low birth weight, birth defects, and mental disabilities.5 Because of their adverse health consequences for both the woman and her future child, health care professionals routinely advise women to abstain from use of these substances during pregnancy, but some do not follow this advice.
Women who are or may become pregnant may also engage in work or recreational activities that expose their future children to health risks. To prevent harm to future children of their employees, and potential liability for causing such harm, for example, some US companies in the 1980s adopted “fetal protection policies” that excluded fertile women from jobs involving exposure to toxic chemicals or to radiation. In its 1991 decision in Automobile Workers v. Grant Controls, Inc., however, the US Supreme Court ruled that a company policy excluding women from jobs manufacturing lead batteries was an instance of sex discrimination that violated women’s civil rights.6 This ruling allows women to choose whether or not to accept employment that poses health risks to themselves and to their future children.
Responses to conflict situations
When a health care professional encounters a situation in which the interests of a pregnant woman and of her future child appear to be opposed, what alternative courses of action should he or she consider? What, if any, courses of action should public officials or other third parties consider in response to maternal-fetal conflict situations? Commentators have proposed and defended multiple options in these situations, including, in rough order from less to more coercive actions:
1. Educating women about health-related choices and their consequences
2. Negotiating a mutually acceptable plan for self- and fetal care
3. Requiring public warnings about risky behaviors during pregnancy
4. Conscientiously refusing to provide health services that may harm the future child
5. Committing pregnant women involuntarily to prevent them from acting in ways that threaten the health of their future children
6. Forcing women to undergo treatment to prevent harm to their future children
7. Prosecuting women for engaging in prohibited behaviors during pregnancy that may have harmed their children
Let’s review each of these responses in turn.
Education
The most benign and uncontroversial action health care professionals can take in apparent maternal-fetal conflict situations is to help the woman to understand the likely consequences of her medical and lifestyle choices for her own health and the health of her future child. This education is, in fact, a standard feature of prenatal care; it enables women to make informed choices about their medical treatment and their health-related behaviors. Armed with this information, most women will choose to accept treatment for the benefit of their future children and to refrain from actions that may harm those children, thus avoiding any conflict between their own interests and those of their future children.
Education alone, however, will not persuade all pregnant women to accept recommended treatments or alter their behavior for the sake of their future children. Some women may not understand the information, despite professionals’ best efforts to convey it, and others may not believe that the information is accurate. Still other women may understand and believe the information, but decide to continue activities they find rewarding, such as smoking or drinking. Some women may desire to alter risky behaviors, such as drug use, but due to addiction may be unable to conform their actions to this desire.
Negotiation
The above description of education by health care professionals suggests a one-way transmission of information from caregivers to their patients. An effective therapeutic relationship, however, requires a dialogue, in which each party shares information with the other, asks questions, and responds to those questions. Thus, professionals should encourage pregnant women to communicate their own preferences, experiences, hopes, and fears, both for themselves and for their future children. Based on this shared information, the parties can evaluate health care options and seek agreement on a prenatal care plan. In this process, each party may offer reasons for a particular course of action, in an effort to persuade the other of its importance. A woman might, for example, emphasize the importance to her of employment that exposes her and her future child to workplace toxins, and her physician may inquire whether there are additional precautions that she can take to minimize those exposures during her pregnancy. The negotiated plan might then be for the woman to take protective measures and for the physician to monitor blood levels of toxic chemicals regularly to determine whether those protective measures are effective.
Like patient education, dialogue and negotiation about treatment options are routine, expected, and morally significant activities within professional–patient relationships. Chervenak and McCullough, for example, recommend education, negotiation, and respectful persuasion as approaches that can prevent most disagreements between pregnant women and their physicians.7 There is, however, no guarantee that these approaches will result in implementation of a mutually agreeable prenatal care plan. Despite their best efforts at persuasion and negotiation, the parties may simply not be able to agree on a plan, or they may not be able to carry out the agreed-on plan. If negotiation is unsuccessful, what other options should be considered?
Public warnings
Legislators in many jurisdictions around the world have enacted statutes requiring posting of public warnings regarding the harmful effects on future children of in utero exposure to commonly used substances, especially tobacco and alcohol. These warnings take several forms, including messages on product containers, messages posted wherever products are bought and sold, and public service announcements on television and radio.8 The obvious public health purpose of these warnings is to inform pregnant women, and others, of the potential adverse effects of these substances on future children and to encourage women to abstain from or to curtail the use of these substances during pregnancy. Other mandatory warning labels describe the harmful effects of these substances on those who use them.
Mandatory public health warnings like these have distinct advantages and disadvantages. Because they can be displayed on the products themselves and wherever the products are sold, they have the potential to reach virtually the entire population engaging in risky behaviors, including women in the earliest days of pregnancy and those who do not seek prenatal care. Studies suggest that these health warnings can influence behavior, especially when they are prominently displayed and contain graphic images.9 Because they are necessarily very brief, however, warning notices can provide only very limited information, and so they are susceptible to misinterpretation. Because they are so widely distributed and are difficult to avoid, warnings override the preferences of those who do not want to receive this information. With repeated exposure, however, warnings may “fade into the background” and lose most of their effectiveness in changing behavior.
Conscientious refusal
As noted above, pregnant women may request medical treatments that pose a recognized risk of harm to their future children. A physician may judge that the requested treatment will be highly beneficial for the woman, as, for example, a course of chemotherapy likely to be effective for a newly diagnosed aggressive cancer, and so agree to provide that treatment despite its potential to injure the future child. In another circumstance, however, the physician may conclude that the expected benefits for the woman of the requested treatment are not sufficient to justify the expected harms of that treatment to the future child. In the latter circumstance, the physician may decide that he or she must conscientiously refuse to provide the requested treatment. Chapter 10, “Professionalism,” includes additional discussion of the scope and limits of professional rights to conscientious refusal to provide medical services.
One prominent example of a medical treatment denied to pregnant women is the anti-acne medication isotretinoin (also known by its trade name Accutane®).10 Isotretinoin is a highly effective prescription medication for severe acne that has not responded to topical or other oral medications. It is, however, also a potent teratogen that poses a very high risk of severe birth defects, including skull and facial deformities and central nervous system, cardiovascular, and glandular abnormalities. To minimize fetal exposure to isotretinoin, the manufacturer makes the drug available only to physicians and patients who agree to adhere to a special distribution and monitoring program that includes patient registration, mandatory counseling, monthly pregnancy testing, and patient use of two forms of contraception. In this special case, physicians have no choice but to refuse requests for this drug by women who are pregnant or who are unwilling to comply with the required drug distribution program. In addition to isotretinoin, the US Food and Drug Administration has classified dozens of other drugs as Category X, contraindicated for use during pregnancy. Relying on that FDA assessment, physicians may choose to deny requests for these drugs by their patients who are pregnant. Refusal to provide Category X medications to pregnant women is, therefore, as much a result of manufacturer and FDA guidelines as it is of individual physician decisions.