$24 million spent on Fort Worth toddler’s life support; hospital says Texas may intervene

Texas has spent $24 million in Medicaid funds to help keep a toddler alive at Cook Children’s Medical Center, the Fort Worth hospital said in an appeal filed April 16 in the ongoing court case surrounding Tinslee Lewis.

Two-year-old Tinslee has been at Cook Children’s for most of her life. Born with a rare heart condition, Tinslee has been kept alive with medical care and “extreme efforts,” the hospital said in the appeal, in which it asked the 48th District Court of Fort Worth to quickly schedule a trial date to decide whether life support care should be removed from Tinslee.

“Although this case has never been about money — and Cook Children’s has never considered finances when making an end-of-life decision,” the appeal says, “the State of Texas (through its manager of a Medicaid care program) is now threatening to interject the issue into this dispute.”

Tinslee’s mother, joined by family members and activist groups, has argued for two years that her daughter deserves to live and she alone has the right to decide if or when medical care should end. Trinity Lewis says there is a possibility that her daughter will get better and the hospital should not be able to decide her fate.

Tinslee breathes with the assistance of a ventilator and is sedated but conscious, Lewis said at a press conference in January 2020, and responds to touch and stimulation as any baby would. Lewis previously described her daughter’s “sassy” personality and said she likes having her nails painted.

But the hospital says that Tinslee cannot feel anything except pain. In multiple court proceedings, doctors testified that Tinslee has no chance of recovery and each day is tortuous for her.

“This child should not be forced to endure this fate for months on end while this matter continues its creep through the legal system,” the appeal filed April 16 said.

The cost of Tinslee’s care has not been mentioned in previous court documents, but Cook Children’s said in the April 16 motion that the state, through a Medicaid agency, is threatening to inject itself into Tinslee’s case.

Tinslee’s medical care is paid for through a special Texas Medicaid managed program known as Texas STAR Kids, the hospital said in the brief. Texas hired a third party to administer the program and evaluate charges to determine whether treatment should be covered.

Texas’ Medicaid manager has begun to review whether Texas should be spending tax dollars on Tinslee’s care “when such care is medically futile, far beyond the applicable medical standard of care, and cannot impact her underlying condition,” according to the hospital.

Tinslee’s condition continues to deteriorate, the hospital said, and it asked in its motion that the 48th District court expedite the legal process to prevent further suffering. The hospital asked the court to set a trial date for July 26.

Legal battle

The legal fight surrounding Tinslee began in October 2019 when Cook Children’s Ethics Committee voted unanimously to end Tinslee’s treatment. Under the Texas Advance Directives Act, the hospital is legally within its right to end treatment for a patient if the care is deemed futile.

However, Lewis fought back. She and her attorney filed an injunction against the hospital in November 2019.

Since then, the case went up through the courts, with each side appealing if the ruling was not in their favor. In January 2020, a judge ruled that Tinslee could be taken off life support after an emotional hearing in the 48th District Court in Fort Worth. In July 2020, the Second Appellate District of Texas in Fort Worth reversed that decision.

In October 2020, the Texas Supreme Court denied the hospital’s petition to take Tinslee off life support and in January, the federal Supreme Court rejected the hospital’s plea, as well.

The case now returns to the lower court for a final ruling. If the 48th District Court rules in favor of Tinslee’s mother, the hospital cannot end her treatment.

The decision would have far-reaching ramifications, as it would essentially rule the Texas Advance Directives Act unconstitutional. Lewis’ attorney has argued the law is unconstitutional because it violates Tinslee’s right to life. Protect Texas’ Fragile Kids, anti-abortion group Texas Alliance for Life and Attorney General Ken Paxton are among those who have weighed in on Tinslee’s case and argued the statute is unconstitutional.

The hospital argues that groups and people have latched onto Tinslee’s case and made her life “into a public circus so that she can serve as a face for their fight to change Texas law.”

While doctors have the right to deny care under common law, the Texas Advance Directives Act outlines a dispute-resolution process and protects the hospital from legal ramifications. The attorney for Cook Children’s, Amy Warr, argued at a previous hearing that physicians have a right to decline care for a patient if that care “causes suffering without medical benefit.”