Born in the USA (33 page)

The Patient Self-Determination Act also says that hospitals must inform patients of their rights when they are admitted.
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Some states, such as New York, have expanded on federally protected patient rights, adding detailed points regarding maternity care as well as describing various grievance procedures available to women if a hospital fails to adhere to their rights.
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Some individual hospitals have also created their own patient bills of rights, showing their intention to uphold the law by respecting patient autonomy.

The legal basis for medical informed consent and the right to refuse treatment came from the laws on battery. In a medical setting, battery is any touching or treatment of a patient that occurs without proper informed consent. This is extended to include medical treatments that are substantially different from the ones a patient consented to, or that are beyond the
scope of the consent, as well as treatment administered by a physician other than the physician who obtained the patient's consent.

However, as the laws have evolved through actual cases, the courts have increasingly defined a lack of proper consent as negligence. For negligence to exist, the lack of proper consent or a failure to meet the standard of care must result in emotional or physical harm worthy of monetary compensation. It must be added that having to prove a failure to meet the standard of care is a slippery slope since, as discussed earlier in this chapter, the concept of standard of care is presently in transition as it becomes clear that defining standard of care as what other doctors in the community do rather than as evidence-based practice results in a “lowest common denominator” standard that severely weakens the patient's protection from questionable or dangerous practices.

The courts have been an important ally in protecting the right to informed consent for pregnant women, especially in recent years. Many people are under the impression that no physician has ever lost a malpractice suit for performing a cesarean. However, in 2005, in the case
Meador v. Stahler and Gheridian
, a jury awarded a $1.5 million settlement to a Massachusetts woman and her husband for her undergoing a medically unnecessary C-section that she had made clear she didn't want.
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The woman had had a previous C-section and prior to going into labor had expressed her desire for a VBAC rather than an elective C-section. Her obstetrician agreed, but did not follow through on the agreement. The woman's attorney successfully claimed that, although her labor appeared to be progressing normally, her obstetrician misrepresented the risks of VBAC, ignored her expressed wishes for a vaginal birth, and compelled her to agree to a C-section in an emotionally coercive manner. The woman suffered physical complications from the C-section that left her largely bedridden and unable to work or meet family responsibilities for several years. Further, her loss of personal decision-making power concerning her body and the birth of her child caused her to suffer from post-traumatic stress disorder. A forensic psychiatrist testified that the lack of informed consent caused the disabling physical and emotional damages experienced by the woman and her family. The attorney also argued that the damages included a loss of “consortium” (sexual companionship) for the woman's husband, and that his loss of consortium was exacerbated by the physicians' failure to include him in the decision-making process, leaving him feeling powerless as well. The jury agreed with this argument as well, and nearly one-third of the total damages was awarded to the husband. Although this case doesn't have the same
legal standing as an appellate court ruling, it does establish a useful precedent that can be used by other women whose lawsuits accuse an obstetrician of negligence due to failure to obtain proper consent.

There have been a number of cases in recent years in which physicians have gone to judges to obtain court orders when pregnant women refused to undergo C-sections.
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In the majority of these cases, the courts sided with physicians and ordered the women to undergo C-sections against their will. However, the trend has now shifted in the other direction. Several appellate decisions (which hold the force of law) have upheld a pregnant woman's right to refuse a C-section, even in situations where her physician believes the life of the fetus is at risk. Apparently the courts now recognize how dangerous it is for medical professionals to make themselves the watchdog of the fetus. It is bad for society. It implies that the woman doesn't have the best interests of her baby at heart. It is dangerous to imply that the doctor cares more about the baby than the mother does. Also, there are religious issues involved, and it is inappropriate for doctors to try to impose their own or anyone else's religious beliefs on the woman and family, who may have different religious beliefs.

The most widely cited case in this area involves a woman named Angela Carder, a pregnant cancer patient who refused to consent to a C-section when she was twenty-five weeks pregnant, and said she wanted cancer treatments instead, which her doctors believed would kill her fetus.
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Officials at George Washington University Hospital obtained a court order to force her to undergo the C-section, and both she and her baby died. Her estate appealed the court order and won. The Court of Appeals upheld a pregnant woman's right to make all medical decisions on behalf of herself and her fetus, arguing that to force invasive treatment on pregnant women would be putting the fetus's rights above the mother's rights. The court added that forcing invasive treatment on a pregnant woman would diminish the rights of born children whose parents could not, by law, be forced to undergo surgery or donate organs on their behalf. The court also ruled that the state's interest in the viability of the fetus and in preventing any potential harm the mother might cause to it by refusing treatment does not override her fundamental right to bodily integrity and informed consent or her right to refuse treatment.

In another case, the Illinois Supreme Court upheld a pregnant woman's right to refuse a blood transfusion.
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Following these decisions and other related cases, ACOG issued ethical guidelines saying that physicians must respect the autonomy of pregnant patients and that using the courts to
compel treatment is rarely, if ever, justified. These guidelines take a clear position on what has come to be called maternal-fetal conflict. They state, “Occasionally, a woman's autonomous decision will seem not to promote beneficence-based obligations to the fetus. In this situation, where there is insufficient time to obtain transfer of care, the obstetrician must respect the patient's autonomy, continue to care for the pregnant woman, and not intervene against the patient's wishes, regardless of the consequences.”
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The guidelines go on to remind physicians that, even in the case of a court order, physical force is never justified.

ACOG's ethical guidelines and ACOG's Committee Opinion paper on informed refusal take an even stronger position on cases where refusing treatment poses no substantial risk to the fetus, saying that patient autonomy in making medical decisions must be respected at all times, that physicians must obtain informed consent for any medical or surgical treatments, and that a patient's decision to forgo treatment based on cultural or religious beliefs and personal preference or comfort must be honored.
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Although failing to meet ACOG's, or any other medical organization's, ethical guidelines is not a crime, these guidelines have been useful in some malpractice cases, and violations have been used as grounds for revoking a physician's license to practice or have led to other disciplinary action in some states and hospitals.

Another area where ethical guidelines have been important is patient abandonment. In
chapter 2
, I mentioned a case in Oakland, California, with an adverse outcome after the woman in labor was given Cytotec for induction of labor. Incredibly, the laboring woman had repeatedly refused the Cytotec because she wanted a natural birth until the obstetrician threatened to discharge her “against medical advice” unless she agreed to have her labor induced with Cytotec. Tragically, not knowing her rights, she gave in to the doctor's demand to use Cytotec for an unwanted induction and as a result she and her baby died.

Many people, unfortunately including many physicians, are under the impression that in instances such as this, where they disagree with their physicians about a course of treatment, their doctors have the right to simply discontinue care. But this is mistaken. Ethical guidelines and federal law (the Emergency Medical Treatment and Active Labor Act, EMTALA) say that a doctor may terminate care only after reasonable notice and after providing for necessary interim or emergency care. Physicians who fail to meet these guidelines can be charged with patient abandonment, which is grounds for malpractice and can result in loss of license. As a general rule, physicians
who wish to discontinue care in a nonemergency situation must notify the patient in writing, give thirty days' notice, and offer a general referral to other obstetricians in the area. And if ongoing care is needed at the time the physician wishes to terminate care (certainly the case with pregnancy and especially during labor), then the physician is obligated to make sure the patient has successfully transferred to another doctor.

An example of widespread failure to honor the rights of pregnant and birthing women is hospitals mandating that pregnant women with prior uterine surgery must undergo cesarean sections in subsequent pregnancies. As discussed earlier, there has been a trend among hospitals to require that a woman who has had a C-section must have C-sections in future pregnancies. This is in direct violation of the laws that protect patient rights, including a pregnant woman's right to refuse treatment. The same legal principles apply to doctors who neglect to inform patients that elective repeat C-sections also involve risks and that VBAC is a medically sound alternative. This means that women who have had repeat C-sections only because of hospital policies banning VBAC can sue for negligence if they or their babies experience any complication they weren't informed of prior to the surgery, particularly if they weren't informed that VBAC was an alternative.

It's important for women who want to have VBAC to know that the Carder case has had a very chilling effect on the willingness of doctors or hospitals to use the courts to force women to undergo C-sections. Many doctors and hospitals continue to coerce women to consent to a C-section by threatening them with a court order, but they and their attorneys are well aware that if they go through with it, and the mother decides to sue, they're looking at a long and expensive legal battle that they will lose in the end. In most cases, a woman who is threatened in this way will be successful if she informs the staff that she knows it's an empty threat, that the law is on her side, and that she plans to appeal the ruling all the way to the Supreme Court if need be. State and federal laws make it clear that hospital policies mandating C-section violate the legal rights of pregnant women and constitute violations of professional ethical standards as well.
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There are a number of things women can do during pregnancy to make sure that their rights are not violated. One strategy is to customize a hospital's boilerplate consent form. Most patients don't know that they are not required by law to sign the hospital's consent form and that they have the right to change it to reflect their wishes regarding specific treatments. Many physicians tell patients that their hospitals' consent forms do not protect
them from lawsuits, but this is not the whole story. If your wish to refuse treatment is documented, under U.S. law it's very difficult, if not impossible, for a hospital or doctor to be held liable for not doing the procedure. On the other hand, if a patient's wish to refuse a C-section is documented and the patient is given one anyway, the doctor and hospital are subject to criminal battery charges, regardless of whether the woman or baby were harmed by the C-section.

A pregnant woman who finds that her hospital is not willing to comply with her wishes for her labor and birth can also file a complaint with the chief compliance officer of the hospital. All hospitals that receive federal funding (approximately 80 percent of hospitals) must adhere to a set of rules called the Center for Medicare and Medicaid Service's (CMS's) conditions of participation (CoP). These rules require hospitals to honor patient rights as defined by the Patient Self-Determination Act, the Consumer Bill of Rights and Responsibilities, EMTALA, and the large number of actual cases that uphold a patient's right to refuse treatment, to be fully informed of the risks, benefits, and alternatives of any proposed treatment, and to participate in all treatment decisions.

Hospitals that fail to adhere to the CoP are subject to heavy fines and risk losing their right to qualify for Medicare and Medicaid funding. In addition, the CoP require that hospitals institute an internal grievance process and give patients the information they need to know about how to file a complaint and where to appeal in the case of an unfavorable ruling.

Once a woman is in labor, she can often get doctors to comply with her wishes by telling them that she is aware of her rights under EMTALA. EMTALA was originally enacted to prevent “patient dumping”—hospitals refusing to admit a woman in labor for whatever reason, often because it appears that she will not be able to pay for maternity services. Before EMTALA, some hospitals would station guards in the hospital parking lots to intercept women in labor and turn them away. Now hospitals are required to admit women in active labor, explain the risks, benefits, and alternatives of all proposed treatments, and honor their treatment wishes, including their right to refuse treatment, regardless of their ability to pay.

Under the act, no patient who requires emergency care, which is defined to include laboring women, can be transferred to another hospital until after they've been “stabilized.” In the case of a woman in labor, stabilization is defined as the delivery of both the baby and the placenta. EMTALA begins to apply when a patient comes within 250 feet of the hospital building. So EMTALA can get the woman in labor into the hospital and, once
inside, if her wishes are not honored, the CoP can make sure they are. There's no question that it can be difficult to sue a doctor for malpractice and that most states do not adequately discipline physicians who commit malpractice, but it can still be worthwhile to sue an obstetrician, especially one who fails to obtain proper consent or who coerces a patient into consenting to a medically unnecessary procedure, such as C-section, that results in physical or emotional harm. Any form of physical force to perform a medical procedure without a patient's consent constitutes grounds for battery (a criminal action) as well as for malpractice (a civil action). Lawsuits can cost a doctor or hospital a great deal of time and money, and until more women pursue this route, physicians will continue to see C-section as a no-fault course of treatment.