When the State Directs Pregnant Women's Treatment Decisions

A recent report published in the Journal of the American Medical Association (2019), reviewed the statutes of 50 states and the District of Columbia governing treatment decisions for incapacitated pregnant women in the United States. Erin DeMartino, MD, a pulmonary and critical care physician at the Mayo Clinic and lead author of the report states, "It would come as a great surprise to many people that there's a medical condition in which women's control of their own health destiny is taken away by the state... That fact is not well-communicated in official state advance directive documents, which the patient fills out in good faith." (1)

An advanced directive is a legal document a person signs indicating a who can make healthcare decisions for them if they become unable to do so, for example, if the person ends up unconscious or in a coma. It also gives instructions about whether the person wishes to be on life support.

When the official state advance directive documents provided to pregnant women by their health care providers do not specify that women's wishes may be overruled by doctors and the state when she is pregnant, and decisionally incapacitated, women lose their right to make an informed choice while they still have the capacity to do so and participate in treatment decisions should a life-and-death situation arise.

In cases where state statutes regarding incapacitated pregnant women are explicitly included in official advance directive documents, women may learn that state regulations will supersede their directives and dictate treatment decisions made by their health care providers. The women's support people and those they designate as surrogate decision makers on their behalf, will be rendered powerless in the face of state statutes.

The JAMA report (4) reveals these facts:

• 38 states identified pregnancy as a condition that may overrule either an incapacitated woman's advance directive or surrogate decision making. Of these, only 8 states' advance directive documents asked for a woman's pregnancy-specific care preferences.
• Of the 30 states that restricted choices about withholding or withdrawing life-sustaining therapies from pregnant women, the restriction was only explicitly laid out in advance directive documents in 2 states.
• 68% of official advance directive forms did not disclose their pregnancy restrictions.
• Of the 30 states with pregnancy restrictions, 25 specifically invalidated a woman's advance directive during pregnancy.
• 19 states prohibited a surrogate decision maker from withdrawing life support from a pregnant woman.
• 18 of the 30 states with restrictions imposed these limits only when, in the opinion of the treating physician, the fetus could survive with continued application of life support to the woman. (4)
• The remaining 12 states required that life support continue to be provided to an incapacitated pregnant woman until her fetus could be safely delivered, no matter the stage of pregnancy when the mother became ill or injured or the status of the fetus. (2)
• Alaska, Georgia, and Oklahoma required physicians to test for pregnancy before withholding or withdrawing life support from female patients of childbearing age.
• Washington and Idaho did not have a specific statute barring the removal of life support from pregnant women, but did state in their DNR (Do Not Resuscitate) forms that it is not allowed. (4)

What does this mean for pregnant women and girls and their families? The following is one example of the impact on a woman and her family of the Texas statute governing treatment decisions for decisionally incapacitated pregnant women.

Marlise Munoz and her husband Erik Munoz were paramedics living in Fort Worth, Texas who frequently discussed their end-of-life wishes with each other and shared their wishes with family members and friends. They specifically did not want to be on life support under any circumstance.

In 2014, Marlise was 14 weeks pregnant when she experienced a pulmonary embolism and was pronounced brain-dead upon arrival at the hospital. She did not have a DNR order, even though her husband knew she did not want to be on life support.

In Texas, there is a statute that forbids doctors from removing a pregnant woman from life support even if she has a DNR. The lawsuit brought by her husband, Erik Munoz against the hospital was decided in his favor and granted the doctors permission to remove her from life support. The decision was based upon the interpretation of the statute as not applying to a pregnant woman who is brain-dead. The permission was granted two months after her admission to the hospital. (3)

There are numerous questions that arise in situations where state statutes govern treatment decisions for decisionally incapacitated pregnant women. It is likely that some of these questions have not been considered by the lawmakers who wrote and voted on these statutes.

• What is the psychological cost to the woman's family, her partner if she has one, or other children she may have in these situations? Having a pregnant partner or family member who is so ill or injured they cannot communicate their preferences for treatment is traumatic in and of itself. Finding oneself in a legal battle, fighting to honor the wishes of this incapacitated person at such a vulnerable time, exponentially exacerbates an already stressful experience for the surrogate, partner, and family members who are close to her. This creates an untenable situation for those who made a commitment to the pregnant woman to advocate for her wishes should she be unable to communicate them in a life-and-death situation. The grieving process of those who are close to the pregnant woman is undoubtedly impacted by the state's direction to keep her alive on life-sustaining machines.
• Who is responsible for paying for the hospital care mandated by the state for a brain-dead mother and her unborn child, one who may be determined to have abnormalities that would likely result in the need for extended neonatal intensive care after birth and specialized treatment well into childhood? Will the health insurance of the pregnant woman (if she has insurance) cover these costs? Pennsylvania is one state that has assumed the financial burden of providing ongoing life-sustaining therapies to a pregnant woman who lacks decisional capacity and has an end-stage medical condition or is permanently unconscious.
• Who will care for the child of a woman who will die after they're born? Who will care for the child if the woman is a single mother?
• What are the impacts on all aspects of prenatal and child development of being gestated inside a woman who is on life support? In keeping a pregnant woman and her fetus alive on life-sustaining machines for an extended period of time, the state is not taking into consideration the complex multifaceted aspects of the prenatal environment that are necessary to support adequate growth, development, and health of a human being over its life span.
• The physical, cognitive, emotional and social impacts over the lifespan on a child who is gestated inside a woman who is on life support have not been studied.
• These pregnancies usually end in premature birth unless the mother becomes incapacitated after the 36th week of pregnancy. The earlier in the pregnancy it is necessary to deliver the fetus due to the condition of the mother and fetus, the worse their chances for survival and the greater their chances of having long-term disabilities associated with premature birth even if they survive.
• An array of medical complications often arise in a brain-dead pregnant individual on life support. These include: hypotension which leads to fetal hypoxia and neurological injury to the fetus; adrenal insufficiency which contributes to hypotension and fetal hypoxia; hypothermia which results in intrauterine growth restriction (IUGR), which is associated with adverse neurological development; and infection that could lead to septicemia—the greatest risk for maternal somatic functions. (5) The conditions themselves compromise the health and development of the fetus. The long-term side effects on the child of the treatment interventions used to manage these conditions in a pregnant woman on life support are unknown.
• If the singular goal of the state is the live birth of the fetus at all costs, no matter how early in the pregnancy they are delivered, and state statutes do not include provisions for support of the health and well-being of that child after birth, the state is relinquishing the responsibility they took for that child when they invalidated the pregnant woman's advance directives.
• The omission of pregnancy-specific restrictions from 68 percent of the official advance directive forms in the 30 states that restrict a woman's right to withhold or withdraw life support, leaves women and their families (intentionally or unintentionally) uninformed and powerless in the most vulnerable and traumatic circumstances. How would a pregnant woman or girl and her family even know this is an issue that deserves their attention? Do their care providers know the regulations in their state if these are not explained in the official advance directive and do they explain them to their patients? How many pregnant women and girls would have the resources to do the research and uncover the restrictions in their state? How many would be able to understand the legal language in these statutes?

We must ask ourselves, what are the beliefs and intentions of the lawmakers and medical systems in the 68 percent of states that have pregnancy restrictions that provide patients with official advance directives that omit the state's limitations on the preferences of pregnant women?

Dr. DeMartino reminds us that, "Advance directives were designed by lawmakers to safeguard patient autonomy and control over medical circumstances that are difficult to anticipate but that may lead to life-and-death decisions." (1)

What we learned from this report is in many states in the US, safeguarding patient autonomy and control over medical circumstances does not apply to incapacitated pregnant women, specifically because they are pregnant. Regardless of whether the woman signed an official advance directive before she became incapacitated, state statutes that conflict with her expressed preferences invalidate and supersede her signed document.

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It appears that incapacitated pregnant women do not have the same rights as non-pregnant women. The laws effectively violate a woman's right to refuse medical treatment, her right to privacy, and her right to terminate a pregnancy, which at this writing, is still a right protected in some states by the Supreme Court decision in Roe v. Wade. (3)

It appears that lawmakers believe that they are better equipped in life-and-death situations regarding a pregnant woman, to make decisions about her body and the fetus she carries, than the woman herself as stated in her official advance directive or by her designated surrogate on her behalf.

Are the lawmakers who wrote these statutes aware of the long-term impacts of these regulations on the lives of the children who survive these state-mandated treatment decisions?

It would be interesting to know if those who voted for these laws have ever faced the circumstances in which their loved one's clearly expressed end-of-life preferences were denied by the state or if they ever imagined themselves being incapacitated and forced to receive medical treatment against their will.