Jahi McMath: Should government, hospital or family decide her fate?

As a mom, I can understand how the mother of 13-year-old Jahi McMath wants to do everything possible to keep her daughter alive.


 Jahi McMath, shown in this undated file photo, was pronounced brain dead after a surgical procedure last month. (AP Photo/Courtesy of McMath Family and Omari Sealey)

But the sad truth is that the young California teen isn’t alive. She’s “brain dead,” a term that confuses people and has to be hard to understand or even believe when it may appear otherwise.

“Despite what they say, she is alive,” Nailah Winkfield, McMath’s mother, wrote in an emotional letter published in the San Jose Mercury News on Dec. 22. “I can touch her, she is warm. She responds to my touch. I can love her — I can feel her love.”

The tragedy began Dec. 9, when Jahi underwent a surgical procedure at Children’s Hospital and Research Center in Oakland to remove her tonsils, adenoids and excess tissue to treat obstructive sleep apnea. She reportedly woke up after the surgery and asked for a popsicle. But later she began bleeding, which led to cardiac arrest. She was put on a ventilator;  on Dec. 12, Jahi was declared brain dead.

We’ve become complacent about medical procedures, but none is without risk. The most common postoperative complication from a tonsillectomy is bleeding, and an August 2013 study found that one patient in anywhere from 1,732 to 170,000 will die as a result.

Pretty rare.

For the mother who’s lost her child, it’s devastating.

And that leads to the “mom guilt” issue, which I suspected might be driving Winkfield’s determination. “Before the surgery she said, ‘I am scared Mommy,’” Winkfield wrote in her letter. “‘ I said, ‘Why Jahi?’ She said, ‘I am afraid I won’t wake up.’ I told her it was going to be fine, it was a simple procedure. I should have listened to her.”

Instead, a legal battle ensued between Winkfield and Children’s Hospital. Now Jahi is in an undisclosed location. Following a judge’s orders, Jahi’s body — still attached to a ventilator — was released Sunday night to the coroner, who then turned her over to Winkfield. The family’s attorney, Christopher Dolan, has announced that the girl is in a medical facility but won’t reveal the location to protect her privacy and because threats have been made against her and her family.

Yet the family has also received overwhelming support. By 8:15 a.m. Tuesday, $54,328 had been raised by 1,500 people in the past 11 days on the Web site gofundme.com, far surpassing the goal of $20,000 but far short of what will be needed to pay for the girl’s medical bills.

The family has also been supported by the Terri Schiavo Life & Hope Network. Schiavo was the center of another legal battle: Her husband wanted to allow her to die, while her parents fought to keep her alive. Schiavo’s case differs from Jahi’s, however, because she hadn’t been declared brain dead. She had suffered serious brain damage and was in what’s often referred to as a persistent vegetative state.

It was a similar situation in the famous case of Karen Ann Quinlan. And also with Robert Wendland of Stockton, Calif., the 49-year-old victim of a car accident in 2001 who was described as being in “a minimally conscious state.” Wendland’s wife and children wanted to allow him to die, but his mother sued to keep him on life support. He died of pneumonia, but the California Supreme Court ruled in his mother’s favor, a blow to the right-to-die movement. In essence, the court held that family members cannot withdraw feeding tubes from a patient who is conscious, even if severely brain damaged, unless the person had left written instructions for those circumstances or had designated a decision-maker.

Understanding the difference between brain death and brain damage is key to understanding the differences in these cases. “Quinlan had brainstem function, while Jahi McMath does not,” Steven Arkin, a neurologist at St. Luke’s Hospital in Kansas City, Mo., explained to me. “Brain death is no brainstem reflexes, no brain activity on an EEG, no blood flow to the brain, no breathing response to high carbon-dioxide levels when the ventilator is removed.”

To say it’s a tough decision to remove life support measures like a ventilator for patients like Schiavo or Quinlan who have some brainstem activity but are not brain dead is an understatement. People should discuss with family members what they would want done in such a situation. Too often, it ends up played out in the courts.

But someone who’s been declared brain dead — like Jahi was almost three weeks ago — is medically and legally dead. Physician Heidi Flori graphically described the condition of Jahi’s body in a court document.

Yet the government is getting blamed. A press release from the Schiavo Network refers to Jahi as “only the latest example of government and hospital boards taking private medical decisions away from families.” Bobby Schindler, the network’s executive director and the brother of the late Terri Schiavo, says, “Given our current medical environment, with more and more emphasis on government, we all have reason to worry.”

In Texas, Erick Munoz is not allowed to make a decision about the treatment of his wife, Marlise Machado Munoz, who was 14 weeks pregnant when she collapsed in November and fell into a vegetative state, because of  law signed in 1999 by then-Gov. George W. Bush. The Texas Advance Directives Act requires keeping even a brain-dead pregnant woman on life support until she gives birth. Seventeen other states have similar laws — and in some cases, the state law voids any “living will” or other directive left by the patient.

It seems like a contradiction to blame the government for interfering in a case like Jahi’s while applauding legal intervention to keep Marlise Machado Munoz alive so that her baby can be born — but it’s the politics of right-to-life versus right-to-die.

If there’s any lesson from the case of Jahi McMath, it’s the need for people to understand the differences between brain death and brain damage, and to discuss their wishes with family members.

“I’ve never seen a brain-dead person come out of it, or anyone in a true vegetative state,” Arkin said. “It’s an ethical dilemma. But her family needs to let her go.”

 

Diana Reese is a journalist in Overland Park, Kan. Follow her on Twitter at @dianareese.
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