The recent Marlise Munoz case should be a call to action for anyone who believes that pregnant women and their families deserve respect. In this case, a Texas hospital forced Munoz’s family to look on as it literally appropriated her lifeless body to try to keep her 14-week fetus alive. Attorneys for the hospital argued that Texas’ advance directive law required this gruesome and costly experiment. While Texas may be especially aggressive in denying pregnant women access to abortion and other health services, it is not an outlier when it comes to discriminatory advance directive laws.
Today, more than 30 states have laws that require a pregnant woman to be kept on mechanical support no matter what her living will says, or what her health-care proxy decides if her wishes are unknown. In the 1980s and ’90s, most states passed “advance directive” laws giving people the right to create a living will and appoint a health-care proxy to ensure that their end-of-life wishes are respected. In return for supporting these laws, groups including the United Catholic Conference insisted that women who are pregnant be excluded from that important right. In several states, pregnant women are excluded from the beginning of their pregnancies. As we explained in an earlier commentary:
[These laws] establish that while men are free to determine what will happen to them if they become sick and unable to communicate their health-care wishes, women who may become pregnant are not free to plan the course of their health care, lives, and deaths.
Sex. Abortion. Parenthood. Power.
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These explicitly sex discriminatory laws finally gained widespread public attention when the Texas hospital invoked such a law not to sustain Munoz’s life over her objections, but to use her dead body for almost nine weeks as what the family’s attorney described as a “dysfunctional incubator.” Her husband challenged this in court. After nine weeks of “living hell” for the family, a judge found that the law did not apply because Munoz was dead. Her body was finally freed from its callous use by the hospital, but there would be no funeral or memorial service because the family feared it would be interrupted by protesters.
Marlise Munoz and the child she hoped to have did not survive. But the law that deprived Munoz and her family of respect and dignity remains. Munoz’s mother, Lynne Machado, has called for changing the law because “one size does not fit all” in cases like these.
She is right. It is time to take action.
2) Take action to repeal your state’s law. Write to, petition, call, meet with, email, and tweet your state legislator, and demand repeal of these discriminatory laws and support for ones that respect women’s right to make end-of-life decisions. Wisconsin activists and legislators are already fighting back with legislation that requires a pregnant woman’s advance directives to be respected.
Need a model law? New Jersey law explicitly allows a woman to include in her advance directive instructions as to what she would want if she were pregnant. The laws should also expressly empower the woman’s designated health-care proxy, such as a spouse, to make this decision if her wishes are not known. Finally, it is important that state laws clearly authorize a health-care surrogate, such as a spouse or other family member, to decide whether or not to keep a pregnant woman on mechanical support when she does not have an advance directive. This is critical because most women of childbearing age have not filled out a living will or signed papers appointing someone as their health-care proxy.
Changing laws does not happen overnight. While the discriminatory laws remain, it is important that you:
3) Take action to inform women and families in your state if they are subject to discriminatory advance directive laws. Any information given by your state to the public, like handbooks and living will forms, should inform women that their advance directive will not be honored if they are pregnant. If your state does not discriminate or is silent on the issue, make sure that public information encourages women to give specific instructions so those acting on her behalf know what she would want if she were pregnant.
4) Take the important steps of filling out a living will and appointing a health-care proxy to make the decisions you would want but might be unable to make—and, again, include instructions about your wishes if you were pregnant. (It is best if you have both documents, since your living will gives guidance to your proxy.)
If your state has a discriminatory advance directive law, do some living will “civil disobedience.” When filling out your living will form, acknowledge the existence of the law but still make your wishes known regarding what should happen if you are pregnant. In addition, when you designate your proxy you should explicitly authorize him or her to challenge any law and/or hospital practice that is being used to deny you the right to end mechanical support because of pregnancy.
It is time to end all laws that dehumanize pregnant women and disrespect families. Repealing discriminatory advance directive laws is one very good place to start.