Commentary Human Rights

In Texas and Canada, Lessons About Who Can—and Should—Make End-of-Life Decisions for Pregnant Persons

Andrea Grimes

The heartbreaking cases of both Robyn Benson and Marlise Munoz illustrate the need to defer to families and medical professionals, rather than bureaucrats and lawmakers, in making end-of-life decisions for pregnant persons.

Robyn Benson, the 32-year-old Canadian woman who was declared brain-dead after she collapsed while 22 weeks pregnant in December, was taken off of a ventilator on Sunday, the day after doctors performed surgery to deliver her son.

Delivered at 28 weeks, baby Iver Cohen Benson is “healthy,” according to his father, Dylan Benson. He told CBC, “Iver is healthy and is the cutest and most precious person I have ever met.” At the same time, he said, he misses his wife “more than words can explain.”

The Benson case has drawn inevitable comparisons to that of Marlise Munoz, the pregnant Texas woman who was kept on a ventilator against her, and her family’s, will for eight weeks by a hospital that said it had no choice but to obey a Texas law that bars the removal of life support from pregnant people. Munoz, however, was dead. Munoz’s husband, Erick, had to fight in court to compel the hospital to take his wife’s deceased body off a ventilator at the end of January.

The differences in the two families’ cases are, however, notable: Munoz collapsed at 14 weeks pregnant, well before the point of fetal viability. Benson collapsed at 22 weeks pregnant, on the cusp of fetal viability. Munoz’s family was prevented from carrying out her stated end-of-life wishes to not be put on a ventilator, while Benson’s family did not find themselves at odds either with Canadian law or with the hospital.

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But what both cases illustrate is the need to defer to families and medical professionals, rather than bureaucrats and lawmakers, in these heartbreaking situations.

Wednesday morning, CNN ran this medically inaccurate, not to mention redundant, headline: “Brain-dead Canadian woman dies after son’s birth.” If the Munoz case taught the wider public anything, it is that brain death is death; this was ultimately the reason a Texas judge compelled John Peter Smith Hospital to take Munoz’s body off the ventilator. A brain-dead Munoz couldn’t receive “life-sustaining treatment” because Munoz was already, medically, deceased.

Anti-choice politicians and pundits used the Munoz case to attempt to score political points with extreme right-wing voters, ignoring the reality of Marlise Munoz’s desire not to be kept on a ventilator and dehumanizing her in the process. Facebook commenters even accused Erick Munoz of being a murderer, and the anti-choice public continues to pit Erick Munoz against Dylan Benson, casting the former as a heartless killer while lionizing Benson. In reality, both men were faced with making unthinkable decisions, and both men did what they thought was right by their partners and their families. I believe we can trust both of these men, just as we, as average citizens, can trust ourselves to make these tough decisions without the heavy-handed direction of black-and-white laws written for very, very gray situations.

While CNN’s reporting was imprecise at best, and factually wrong at worst, we must recognize that there is room for nuance in the way we talk and write about these cases. Dylan Benson did not consider his wife dead, and because he was acting in what he and Robyn’s doctors believed was a responsible, ethical way, I believe we owe it to Dylan Benson to allow him to set the terms of the end of his wife’s life. If Dylan Benson says his wife died on Sunday, after doctors removed her from ventilators, Benson is right; equally right, however, are the medical professionals who considered her deceased when she was diagnosed with brain death.

I believe in the average person’s ability to make compassionate, informed, good-faith decisions for their loved ones in these terrible and tragic situations. I do not believe that any given legislator, bureaucrat, or government entity would have known better than Dylan Benson, or Erick Munoz, how to handle a complicated, heartbreaking, and very personal situation involving brain death and pregnancy.

And evidence suggests I’m not alone. While people moved by Benson’s story have donated around $144,000 to help Benson get started in his life as a single father, Erick Munoz also saw a similar outpouring of aid—in the form of money, but also items like diapers and other child-rearing necessities for his son Mateo. What this tells me is that folks do indeed see the gray areas, trusting families to make hard decisions according to what they believe and know about their loved ones—whether that decision is an attempt to sustain a pregnancy, or a decision to end one.

Which illustrates precisely why prescriptive, nuance-free laws, like the one in Texas that John Peter Smith Hospital used to keep a dead Marlise Munoz on a ventilator against her will, are not only cruel, but also not reflective of the way voters and taxpayers believe these situations should be handled.

News Law and Policy

‘Marlise’s Law’ Could Give End-of-Life Rights to Pregnant Texans

Andrea Grimes

HB 3183 would strike a line in the state's advance directives code that bars the code from applying in cases where a patient is pregnant. Had such a law been in place in 2013, Marlise Muñoz's family would have been allowed to refuse mechanical support for her corpse.

The family of Marlise Muñoz, the pregnant Texas woman who was declared brain-dead in 2013 but whose body was kept on mechanical support against her wishes for months, testified on Wednesday in support of a proposed bill that would give end-of-life decision-making rights to pregnant Texans.

HB 3183 would strike a line in the state’s advance directives code that bars the code from applying in cases where a patient is pregnant. Had such a law been in place in 2013, Marlise Muñoz’s family would have been allowed to refuse mechanical support for her corpse. Instead, they were forced to take a North Texas county hospital to court in January 2014 to allow Muñoz—who was 14 weeks pregnant when she collapsed at home from a pulmonary embolism—to be taken off of machines.

“Our daughter was not in a coma or unconscious,” said Marlise Muñoz’s mother Lynne Machado, testifying in front of the state House State Affairs Committee on Wednesday afternoon. “Our daughter was dead.”

Currently, Texas law blocks pregnant people from being able to issue advance directives about their end-of-life care, requiring doctors and hospitals to keep pregnant Texans on mechanical support against their consent and regardless of their, or their families’ instructions.

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Erick Muñoz, Marlise’s husband, also testified in front of the committee, saying these end-of-life decisions should be “completely up to the family,” and not the state government.

“I could not do anything to help my wife,” he said. “Literally. Could not do anything to help my wife.”

Erick Muñoz testified that his wife’s health insurance paid for most of her forced medical interventions, and that John Peter Smith Hospital, where her body was held against her and her family’s will, waived the fees that he would have been responsible for on top of those insurance payments.

Representatives from anti-abortion groups testified against the bill, often drawing gasps from audience members in the hearing room who came out to support the Muñoz and Machado family.

Cecilia Wood, of the right-wing Concerned Women for America group, testified that she did not intend any “disrespect” for Marlise Muñoz’s family, but said that the “life of a pre-born child” necessitates that pregnant Texans be forced to remain on mechanical support against their wishes. Wood said she believed that it might “sound really horrible,” but in her opinion, “it would never have been okay to abide by the wishes of the family” in Marlise Muñoz’s case.

Wood said that the state should pay for these forced medical interventions, just as it pays to incarcerate people in jails and prisons.

Jeremy Newman, a representative from the anti-choice Texas Homeschool Coalition argued against HB 3183 because he believes it would infringe upon parental rights. Newman also testified that he “assumed” Marlise Muñoz, who worked as an EMT, could not have been aware of the meaning of her wishes to refuse mechanical support.

Later, an anti-choice doctor and representative from the Texas Alliance for Life testified that the law amounted to “micromanaging” and was legally unnecessary.

“I’m not an expert on this sort of medicine,” testified Dr. Beverly Nuckols, “but I do read a lot.”

When closing on the bill hearing, HB 3183 sponsor Rep. Elliott Naishtat asked aloud, “How can you give life-sustaining treatment to a person who is dead?”

The bill was left pending in committee, though another bill, HB 1901, directly counters the intention of “Marlise’s Law” and would force families like the Muñozes and Machados to take the state to court in order to remove their loved ones from mechanical support. It has not yet been assigned a hearing.

News Law and Policy

‘Marlise’s Law’ Would Give Pregnant Texans Advance Directive Rights

Andrea Grimes

A Texas lawmaker has proposed a bill that would give pregnant Texans and their families the same end-of-life decision-making rights as non-pregnant people, striking a line from a health and safety statute that requires pregnant people be kept on mechanical support against their advance directives.

A Texas lawmaker has proposed a bill that would give pregnant Texans and their families the same end-of-life decision-making rights as non-pregnant people, striking a line from a health and safety statute that requires pregnant people be kept on mechanical support against their advance directives.

The family of Marlise Munoz, the pregnant North Texas woman who was kept on mechanical support at the state’s insistence for two months after she was declared brain dead in 2013, supported the bill, saying it would give Texas families the privacy and dignity they deserve, and keep politicians out of medical decisions best left to doctors and families.

“It gives [families] the ability to come together with consultation from doctors of medicine, and sit down as a family and decide how to proceed,” said Erick Munoz, Marlise’s husband and father of their son, Mateo, at an often emotional press conference Thursday morning.

Marlise Munoz collapsed in her home in November 2013 when she was 14 weeks pregnant. Two days later, doctors declared her brain dead. But John Peter Smith Hospital said it could not, by law, remove her from mechanical support because of her pregnancy.

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Texas law does not allow medical professionals to “withdraw or withhold life-sustaining treatment … from a pregnant patient,” even if it goes against their previously stated instructions.

Marlise’s family said Munoz, a paramedic who was familiar with the medical and ethical issues related to life support, had been clear that she never wanted to be kept alive by machine. While Munoz was hospitalized, anti-choice Texas politicians and lobby groups spoke out against the Munoz family’s desire to honor Marlise’s wishes. Her family eventually obtained a court order allowing Munoz to be taken off a ventilator.

“We did what was best for Marlise,” said her father, Ernie Machado. “We continue to do what we think is best for Marlise now that she has passed away, so that other families don’t have to go through what we did.”

Machado said that his daughter “was human, she wasn’t an experiment.” He described Munoz as a woman who “loved her work” and “loved her friends,” and as a mother who “was very concerned with the nucleus of her family and the strength and bonds of having a family.”

Erick Munoz said that because both he and his wife worked as paramedics, they uniquely understood the stresses of each others’ jobs and could talk to each other about anything. Part of that included talking honestly about their end-of-life wishes.

Munoz’s mother, Lynne Machado, told reporters that her daughter’s death was “one of the most difficult moments of [their] lives,” made “more difficult because politics were involved.”

Already, anti-choice Republican Rep. Matt Krause, who represents Fort Worth, has filed a bill, HB 1901, that would strengthen the existing law by appointing attorneys for the fetuses of brain-dead pregnant people, forcing mourning families to go to court to allow their loved ones’ wishes to be observed.

Lynne Machado emphasized that “Marlise’s Law” is not “a response to any single politician or their efforts,” but did say that “some politicians are continuing to use our personal tragedy to publicize themselves.”

More than 30 states have similar laws to Texas‘, denying people the right to have their advance directives observed if they are pregnant. Rep. Krause’s bill has been referred to Texas’ House State Affairs committee; “Marlise’s Law” has yet to be assigned to committee.