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At 9 months old, Tinslee Lewis had been on a respirator for much of her life. The Fort Worth toddler was born with Ebstein’s anomaly, a rare and often life-threatening heart condition.
Lewis had been at the intensive care unit at Cook Children’s Medical Center since birth when doctors scheduled to remove her from life support in November 2019. It started a public court battle, where her mother fought the hospital to keep her alive. She drew the support of Gov. Greg Abbott, Attorney General Ken Paxton and staunch anti-abortion group Texas Right To Life.
Her legal fight renewed the push to change legislation over when and how hospitals withdraw life support.
In Texas, hospitals can withdraw life support from their patients 10 days after they notify the patient’s family. Under the contentious Texas Advance Directives Act, life support can be removed when the hospital determines current care as “futile.”
Starting Friday, House Bill 3162 will increase how much notice hospitals have to give patients’ families from 10 days to 25 days. That new threshold will now begin when medical professionals tell relatives of their intent to end care and give family members an opportunity to find a different health care facility willing to treat the patient. If the family wants to move the patient to another facility, doctors must perform any procedures necessary for a patient to be transferred.
Texas is among a small number of states that have a notice period before doctors are allowed to remove patients from life support. Most states have laws that say doctors are not required to provide futile treatment. Ambiguity over what that means can make it easier for families to challenge attempts to withdraw life support in court, said John Seago, the president of Texas Right To Life.
His group would have preferred that lawmakers require medical professionals to keep patients on life support until families find another health care facility willing to take them in.
“While 25 days is not anywhere close to where we want to be, this package also had other meaningful reforms of the process that are going to be good for Texas,” Seago said. “We were also talking about other good changes to make the process more pro-patient and pro-family.”
One of the new requirements that Seago supports is that families are allowed to participate in meetings when an ethics review committee evaluates a doctor’s decision to end life support.
The new law also requires hospitals to track and report to the Health and Human Services Commission when doctors are withdrawing life-sustaining care.
Texas lawmakers have tried unsuccessfully for years to change the Texas Advance Directives Act. Two years ago, legislation failed after advocates for hospitals and for patients couldn’t agree on when and how doctors should be allowed to remove life support without relatives' permission.
“We've engaged in deliberation pretty much every legislative session,” said Mark Andrew Casanova, an ethics consultant for Baylor University Medical Center. “I think the issue, the crux of it, was we were just never able to come to areas of consensus or agreement.”
State Rep. Stephanie Klick, R-Fort Worth, tried a different tactic ahead of this year’s regular session. Months before lawmakers gaveled in, patient advocates and hospital representatives gathered in the members’ lounge of the Capitol.
They started with a whiteboard — and went back and forth over more than a dozen meetings on how to word amendments to the law. The bill overwhelmingly passed both chambers.
"Quite frankly, we got way more in the way of reforms than I was expecting," Klick said. "But the stakeholders, they worked hard. We put hundreds of hours in on that bill. The public, when they see how quickly it passed on the floor with very little debate, that's because we've been working for nine months."
Tinslee went home with her mother in April 2022 after a Texas appeals court ruled that she could stay on life support. The family couldn’t be reached for comment this month. Seago said Tinslee celebrated her 4th birthday in February.
Despite the change to the law, some groups still want more patients and their families to have even more of a say.
“We're from a policy perspective behind the curve in responding to the needs of these vulnerable populations,” Terri Carriker, with Protect TX Fragile Kids, said. “And so I think that misses the boat in calling ourselves truly pro-life.”
Disclosure: Baylor University has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.
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