To die or not to die: The New Yorker probes the case of a 13-year-old girl

Occasionally there comes a story that’s a mishmash of religion and ethics to the point where it’s unclear where one ends and the other begins. Such is this New Yorker piece on Jahi McMath, a 13-year-old Oakland, Calif., girl who went in to have her tonsils removed and ended up brain-dead.

Being that one of my daughter’s friends nearly died after a tonsillectomy, I knew how things can wrong really fast after one of those operations and how clueless the medical professionals can be. And, according to this tale, they ignored this child’s copious bleeding and obvious distress until her heart stopped a few hours later.

They got her breathing started again but declared her brain dead two days later. Days passed, but for her furious family, the battle had just begun. It was December 2013. The family hired a personal injury lawyer to, among other things, keep the hospital from pulling the ventilator plug.

Here’s where the religion part comes in:

A self-described “cafeteria Catholic,” he acted on a vague feeling that a child with a beating heart was not entirely dead. He wrote a cease-and-desist order: if doctors unplugged Jahi’s ventilator, he said, they would violate her and her family’s civil rights…In a separate motion, Dolan argued that the hospital was infringing on (the mother) Nailah’s right to express her religion. He said that, as a Christian, she believed that her daughter’s soul inhabited her body as long as her heart beat.

We never do learn in this story what kind of Christian the mom is, nor if her pastor or church played any role in the saga. When we first covered this in 2014, there was a similar haziness about specifics. We did find one newspaper that identified Jahi's mother as a Baptist. But other pastors were in the story.

Three days before Christmas, a group of church leaders in Oakland gathered in front of the hospital and asked the district attorney to investigate what had happened to Jahi. “Is not Jahi worthy of the highest amount of medical treatment?” Brian K. Woodson, Sr., the pastor of Bay Area Christian Connection, said at a press conference.

Soon after that, the story links Jahi’s case to that of Terry Schiavo, a Florida woman who was in a vegetative state for 15 years and whose estranged husband eventually succeeded in getting her feeding tube disconnected. (She died two weeks later). Which is why Dolan, the lawyer, spirited Jahi away from her California hospital room and onto a plane.

Nailah was the only family member permitted on the plane, which was paid for with money received from GoFundMe. Nailah was terrified of the noise her daughter’s portable respirator was making, which seemed as loud as the jet’s engine. It wasn’t until they landed that she learned they were in New Jersey, one of only two states—New York is the other—where families can reject the concept of brain death if it violates their religious beliefs. The laws in both states were written to accommodate Orthodox Jews, some of whom believe, citing the Talmud, that the presence of breath signifies life.

The ensuing discussion is what gets into that mix of religion and ethics.

Bioethicists also disparaged the family’s decision. In an op-ed in Newsday, Arthur Caplan, the founding director of N.Y.U.’s Division of Medical Ethics and perhaps the best-known bioethicist in the country, wrote, “Keeping her on a ventilator amounts to desecration of a body.” He told CNN, “There isn’t any likelihood that she’s gonna survive very long.” In an interview with USA Today, he said, “You can’t really feed a corpse” and “She is going to start to decompose.” Laurence McCullough, a professor of medical ethics at Cornell, criticized any hospital that would admit Jahi. “What could they be thinking?” he said to USA Today. “There is a word for this: crazy.”

What follows is a lengthy discussion on the nature of death and whether it happens when breathing stops or when the brain ceases to function and also how definitions of death have been broadened in recent decades to allow for organ donation. Jahi ended up at a Catholic hospital where even its personnel were divided on whether the girl was dead or not. I would have liked to seen a quote from a Catholic ethicist at this point, but there was none.

Finally in July 2014, the family moves the girl into a private residence with constant nursing care while fighting for the right to not unplug their daughter. You can follow the case on Facebook here. The article continues to sprinkle teasing anecdotes on religion:

Nailah read the Bible more than she ever had, and she tried to entertain the idea that God had chosen her to suffer this way because she was resilient enough to endure it. On her Facebook page, she described herself as “just a strong black woman who is not in the mood for anyone’s bullshit!” But she couldn’t accept the idea that divine logic was at work. “I really don’t feel like this was God’s plan for my kid’s life,” she said.

So, I’m not complaining here about a religion ghost per se, but only for the lack of specificity in terms of the religious practice of its central characters. Near the end of the piece, the family documents how Jahi – despite the lack of much of her brain tissue – reacts to what people tell her but moving a finger.

Then the story brings up a California neurologist who converted to Catholicism in college because he felt there must be an intelligence behind the complexity and beauty of life on Earth. The story explains how he helped change the views of the medical field as to what brain death is, mainly because of exceptions like Jahi and because he realized that our knowledge of the brain is so limited. I wish the reporter had let the doctor talk more about the theology behind his conclusions, as he obviously had some.

There’s more that I’ve not mentioned and the piece is certainly worth reading for the ethical problems it brings up. In one way, it's beautifully written but in another, there are so many missed opportunities for explaining why this issue needs some religious experts. I wish some kind of theological expertise had been included in it.

Life and death issues are not just a matter of ethics committees. To be on the brink of death is intensely theological and a lot of rich quotes could have come from that quarter.

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