http://www.nytimes.com/2014/01/19/opinion/sunday/bruni-the-cruelest-pregnancy.html?ref=opinionThe Cruelest Pregnancy
JAN. 18, 2014
WHAT would Marlise Munoz have made of all of this?
We’ll never know. She can no longer form words. Can no longer form thoughts. It’s arguable that we shouldn’t even be referring to a “she,” to a “her,” because if she’s brain-dead, as her family has consistently said, then she meets the legal criteria for death in all 50 states, and what’s been tethered to machines in a hospital in Fort Worth for the last seven weeks isn’t exactly a mother. It’s an artificially maintained ecosystem, an incubator for a fetus that has somehow been given precedence over all other concerns: the pain of Marlise’s husband and parents; their wishes to put an end to this; their best guess about what her desires would have been; her transformation, without any possibility of her consent, into a mere vessel.
“A host,” her father, Ernest Machado, called her in an interview with Manny Fernandez of The Times. He used equally chilling language to describe her stillness and the rubbery feel of her skin, saying that she reminded him of “a mannequin.”
Is her fate really what we mean when we speak of “valuing life” or “the sanctity of life,” to summon two phrases tossed around too quickly and simplistically? It seems to me that several lives are being devalued in the process, and that while there are no happy outcomes here, there’s also no sense or dignity on the chilling road that this Texas hospital is taking us down.
In late November, Marlise, 33, was found unconscious on the kitchen floor by her husband, Erick. She had apparently suffered a pulmonary embolism. At the hospital, according to Erick’s subsequent statements, it was determined that she was brain-dead, and he requested that she be disconnected from the machines that keep her vital organs functioning. He and she had both worked as paramedics and had discussed such end-of-life decisions, he said, and so he knew that she wouldn’t have wanted any extraordinary measures taken. The woman he loved was gone. It was time to come to bitter terms with that, and to say goodbye.
Hospital officials, supposedly acting on behalf of the state, won’t let him. They went ahead with extraordinary measures, because Marlise was 14 weeks pregnant, and while that fell well within the window when abortion is legal, a Texas law compels hospitals to provide life support for terminally ill patients with fetuses developing inside them.
There’s considerable dispute about whether this law in fact covers Marlise’s situation: about whether someone brain-dead qualifies as a patient and can be said to be receiving life support. Hospital officials have not formally confirmed that she’s brain-dead, explaining that her husband hasn’t granted them dispensation to discuss specifics of her condition. Lawyers representing him told CNN on Friday that her medical records indeed document brain death.
But regardless of the law and whether it applies to Marlise’s case, the treatment of her and her family isn’t just or right, for many reasons.
It’s not at all clear, for starters, that the fetus has a good chance of surviving inside the womb or of flourishing outside of it. In a study of a few dozen cases of continued pregnancies inside brain-dead women, only one of the five fetuses that were between 13 and 15 weeks at the time of the mother’s brain death was successfully delivered — by cesarean section — and kept alive, though the study tracked the boy only until 11 months after his birth.
I talked last week with two prominent obstetricians, both of whom said that it was impossible, until relatively late in a pregnancy, to get any real sense of how much neurological damage a fetus may have already suffered as a result of a maternal embolism and of any oxygen deprivation that occurred. They also said that a pregnancy dependent on artificial organ maintenance entails an array of dangers to the fetus beyond ordinary ones, including the mother’s susceptibility to infections.
“It’s extremely risky for fetal development,” said Mary D’Alton, the head of obstetrics and gynecology at Columbia University Medical Center and NewYork-Presbyterian Hospital. But, she added, “If the family is willing and it’s something they want, it’s something I would attempt — and have attempted.” She said that she was involved in two such pregnancies. In one, the fetus died in utero at 27 weeks. In the other, a child was born, but with problems.
She dwelt on the part about the family’s will, focusing on a simple truth that the Texas situation sweeps to the side. “They will live with the impact,” D’Alton said.
From what’s been reported about Marlise’s case, the hospital, executing the will of the state, has been making all of the calls about the care of the fetus, now about 21 weeks along. (The threshold for viability is generally considered to be 24 weeks.) But if there’s a premature birth and quick death, Marlise’s husband and parents will presumably be expected to deal with that.
And if a baby is born with severe and enduring ailments, Marlise’s husband and parents will presumably inherit the effort to give that child a decent quality of life, which is a concept that goes strangely missing in too many disputes over the unborn.
In other words they’ll possibly confront a slew of decisions “downstream from a decision that they already made and that got overruled,” the one to remove her from machines, said Hyagriv Simhan, the chief of maternal-fetal medicine at the University of Pittsburgh Medical Center. “It’s quite complex.”
That’s one word for it. Cruel is another.
Marlise apparently didn’t leave any advance medical directive covering the particular scenario of artificial organ maintenance for a fetus well shy of viability. How many women do? In the absence of such instructions, her physicians should have done what they would have if there’d been no fetus — looked to, and heeded, her obvious surrogates, her next of kin. In her instance there’s a husband and two parents all certain of what to do and all on the same page. Still it doesn’t matter, because of a Texas statute that’s too far-reaching, too ambiguous and at strange odds with the state’s abortion laws.
While Texas, like other states, has been trying to make it harder and harder to obtain abortions, it cannot ultimately prevent a woman who is still able to speak for herself from ending a pregnancy in the early stages. How, then, can it prevent a family who speaks legitimately for her from taking that same step? Especially in a circumstance like this, so riddled with risks, questions and heartbreak? Marlise’s husband and parents may not be able to ask her what she’d make of it. But they’re the ones left to behold and grieve over what’s been made of her.
