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The hospital says she’s brain-dead. Her parents say she’s alive. Who decides when to take her off the ventilator?

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Texas Tribune

October 3, 2018

If 9-year-old Payton Summons were lying in a hospital bed in Oklahoma, her parents would have more control over the ventilator that’s currently breathing for her. But 100 miles south in Fort Worth, it’s largely left up to her doctors. 

Summons, a Grand Prairie child who has cancer, went to Cook Children’s Medical Center in Fort Worth last week after a large tumor in her chest began to restrict her breathing. After an hour of emergency treatment, medical personnel were able to restore her heartbeat, but Summons had already suffered brain damage, and still requires a ventilator to breathe. Her doctors have declared her brain-dead. 

Summons’ doctors want to take her off the ventilator. Her parents are adamantly opposed. And Texas law — to a greater extent, experts said, than statutes in almost any other state — favors the positions of the doctors. 

“Her heart rate was still great,” Summons’ mother, Tiffany Hofstetter, told a Dallas TV station. “Her organs were functioning. She’s still alive. Give her a chance.” 

On Monday, Summons’ parents won an emergency court order to temporarily block the hospital from shutting off the ventilator that is maintaining her breathing. A Tarrant County judge said the hospital may not cut off the ventilator until Oct. 15, unless things change at a hearing set for this Friday. But unless the family and their lawyers are able to find a different physician at a different hospital that’s willing to take on Summons despite her difficult situation — a tall order, experts said — the Cook Children’s Medical Center doctors have the legal right to set the course of Summons’ treatment. 

If they cannot transfer her to a different hospital, she may be taken off the ventilator over their objections. 

That’s the result of a controversial 1999 state law, near-unique in the country, that allows doctors in Texas to withdraw some forms of life-sustaining treatment even over the wishes of the patient’s family, as long as the physician has the backing of her hospital’s ethics committee. Doctors in Texas are also protected from any civil or criminal liability — meaning grieving family members can’t easily take physicians to court after their loved ones have been taken off ventilators. 

In states such as Oklahoma, by contrast, doctors are explicitly forbidden from withdrawing life-sustaining treatment without agreement from the patient or patients’ legal surrogates. Just two other states, California and Virginia, offer broad, “green light” protections like those in Texas, experts said. 

The Texas Advance Directives Act passed in 1999 with broad support from hospitals associations, physicians’ organizations and even the anti-abortion group Texas Right to Life. But in the two decades since, that consensus has fallen away; legislators have systematically narrowed it in a series of new laws, and Texas Right to Life has become one of its fiercest critics. 

It has even drawn the rare opposition of Texas Attorney General Ken Paxton, who called the law unconstitutional in an October 2016 court brief. That’s a highly unusual move from the attorney general, who is charged with defending state laws — and his opposition could spell doom for the controversial measure as cases continue to wend their way through the courts. One case challenging the statute as unconstitutional is currently pending before a Houston-area appeals court. 

Critics say highly personal end-of-life medical decisions should always be left up to patients and their families. 

“This is a basic question: Who gets to decide, when it comes down to basic, basic care like that — food, water and air?” said John Seago, legislative director for Texas Right to Life. “Our position is that on such basic care, those decisions have to be left up to the patients or their surrogates. … It’s only ethical to allow the patients and the patient surrogates to decide.” 

But for doctors, continuing life-sustaining treatment for patients who are beyond saving is emotionally taxing — and in some cases, can even violate their oath to “do no harm” to their patients. Doctors say it’s wrong to continue measures that cannot meaningfully help the patient. 

“I took an oath to do things for the benefit of the patient — what I’m doing now is for the benefit of the grieving family,” said Bob Fine, a palliative care physician who helped craft the 1999 law. “It’s wrong to do something to a patient only for the benefit of the family.” 

For now, those questions are up in the air in Summons’ case. The hospital argues that Summons is already dead — meaning the controversial law does not apply to her — and that she should be removed from the ventilator. 

Her family members, who believe she is still alive, have argued the law does apply to her — but even if it does, they have few options. 

Summons’ parents are suing under the law to seek more time for a transfer, under a provision that was intended as an “safety valve” for families of ailing patients, Seago said. But that provision rarely bears out in practice; Fine called it “phenomenally rare.” Few doctors would accept a terminal patient when their colleagues have already said continuing treatment is medically inappropriate. And if Summons doesn’t move hospitals, she may be taken off the ventilator. 

Seago said the transfer provision “is doomed by design” — and that’s one reason the organization has changed its position on the law. It’s “practically impossible” to get patients like Summons transferred to other doctors, he said. 

The law will be a top priority for his organization when the legislative session kicks off in 2019, he said. 

“The hospital says she’s brain-dead. Her parents say she’s alive. Who decides when to take her off the ventilator?” was first published at by The Texas Tribune, a nonprofit, nonpartisan media organization that informs Texans — and engages with them — about public policy, politics, government and statewide issues.

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