Lawmakers have no business legislating end-of-life decisions

By TOM MAYO AND ARTHUR CAPLAN

This week, the Texas Legislature considered restoring to pregnant women a right every other adult Texan already enjoys: the right to make health-care treatment decisions in an advance directive or through the next-of-kin who speaks for them.

House Bill 3183 would eliminate all vestiges of the “pregnancy exclusion” from Texas’ Advance Directives Act. If it passes, the bill would remove the basis on which a Fort Worth hospital in 2013 kept brain-dead and pregnant Marlise Muñoz on life support for two months. This was done despite her husband’s insistence that his wife would not want to be hooked up to machines under those circumstances.

Eventually, a trial court agreed with her husband and declared that the pregnancy exclusion and the entire Advance Directives Act did not apply to a patient once she had died. That was only after Marlise Muñoz’s family had to endure the unimaginable pain of watching her corpse deteriorate before their eyes. Little wonder that they support “Marlise’s Law” and were in Austin to testify in support of the bill.

HB 3183, however, would do much more than prevent future abuses of brain-dead women as Texas law now stands. If the pregnancy exclusion is not removed from the Advance Directives Act, it could be used as a basis to ignore the treatment wishes of any pregnant patient with a terminal or irreversible medical condition who lacked decision-making capacity. If the bill passes, Texas would become one of 20 states that, sensibly, allow treatment decisions for a comatose pregnant patient to be based on her own expressed preferences or the treatment decisions of a surrogate decision-maker.

Thirty states have their own versions of a pregnancy exclusion in their health care laws. Another bill pending before the House Committee on State Affairs goes far further than any of those. HB 1901 would extend Texas’ existing exclusion to make it apply to patients like Marlise Muñoz. It requires the Texas Attorney General to appoint an attorney ad litem to “represent the unborn child’s interests ... in any litigation or other matter regarding the health care decisions made for the pregnant patient.”

This bill would turn medical practice on its head. Instead of being a corpse sent to the morgue, a brain-dead woman would be transformed into a “patient” for whom “health-care decisions” would be made. Even worse, a dead body — even one attended by critical care doctors and staff — can sustain early fetal life for a relatively short period of time. After that, as the unfortunate case of Marlise Muñoz illustrates, the fetus is no longer viable. To legislate such a result is to create utter misery for someone who has lost a wife, a daughter or a sister. HB 1901 dishonors the memory of Ms. Muñoz and the suffering of her husband and parents.

Medical decisions involving critically ill, pregnant women are terribly hard. They ought be guided by the patient’s wishes or input from her spouse and immediate family, should she be unable to communicate. Legislators should not be at the bedside.

Medical decisions about the newly dead are also extraordinarily difficult. There is even less of a case for bringing the Texas legislature into the room to resolve them. Passing Marlise’s Law gives authority over these decisions to those who ought have it — the patient and her family.

Tom Mayo is an associate professor at Southern Methodist University. Reach him at tmayo@mail.smu.edu. Arthur Caplan is a founding director of the Division of Medical Ethics at the NYU Langone Medical Center. Reach him at arthur.caplan@nyumc.org.