-- A Texas woman who fought to get her brain-dead daughter off of life support is hoping a new bill in the state legislature can help families avoid an ordeal similar to the one she went through when making end-of-life decisions.
“The state not only tied our hands, but those of the doctors and the hospital too,” Lynne Machado said at a news conference to introduce the new bill, dubbed "Marlise's Law. "What should have been an immensely private and personal moment for our family was used as a political debate. The doctors weren’t practicing medicine. They were practicing politics.”
And the politics continue. In addition to "Marlise's Law," introduced by Texas State Rep. Elliot Naishtat, a Democrat, a proposal to move the rules in the opposite direction has been introduced by a Republican.
Machado has described the two months her daughter, Marlise Munoz, was on life support as a living nightmare. The young and pregnant mother was just 33 when a pulmonary embolism left her brain dead.
Munoz, a paramedic, had told members of her family that she never wanted to be on life support, but the hospital where she was taken refused to remove the support systems because of a Texas law that prohibited removing “life-sustaining” treatment for any pregnant patient.
“We felt, in our opinion, that the government was getting involved in something that they didn’t have the right to get involved in,” Machado said.
It took two months for Munoz’s family to win the right to remove Munoz from life support based on the fact that she was a deceased person and, therefore, not a patient. But the memories of seeing her daughter’s body deteriorate before her eyes has haunted Machado over the past year.
“When I kissed her goodbye, I could smell death,” she said. “I don’t have a lot of experience with death [but] it’s one of those smells you know what it is.”
Eventually, Machado said, she, her husband, Ernie Machado, and Munoz’s husband, Erick Munoz, decided they wanted to get involved with changing the law itself. Today, they became the face of “Marlise’s Law.” The bill would remove the pregnancy exclusion from the Texas law that outlines guidelines for end-of-life procedures.
"This bill would allow women autonomy when planning their wishes regarding extraordinary medical interventions during end-of-life care," Naishtat, the bill’s sponsor, said in a statement. "Marlise’s Law enables physicians, health care providers and medical institutions to honor a woman's wishes and personal values, and preserve the doctor-patient relationship.”
An opposing bill introduced last week by Texas Rep. Matt Krause, a Republican, would make it illegal to stop life-sustaining treatment for a pregnant woman -- even if there is “irreversible cessation of all spontaneous brain function" -- and would require the appointment of a guardian ad litem for the fetus.
Of "Marlise's Law," Kraus said, "It's kind of a 180 from what we're seeking to do. ... I think it would be a mistake to overturn that [current Texas law]. I don’t see a position like that gaining traction in the house."
Machado has said she and her family will testify against Krause’s bill if it is presented at a committee.
Machado, whose family's fight will be documented in the upcoming documentary "The Pregnancy Exclusion," said she, her husband and son-in-law were so shocked by the hospital's disregard for Marlise Munoz's end-of-life wishes, that they knew they would have to go public to raise awareness and try to change the law.
“We were in it to educate people, that was one of our goals,” said Machado. “We could get the word out to people about this little known law and also a pregnant woman’s rights is nullified and the father has no say,” in end-of-life decisions for pregnant women.