Inside a Texas children’s hospital, an 11-month-old girl lies paralyzed and in constant pain. She can breathe only with a ventilator. A suite of medications keeps her alive.
Tinslee’s condition, doctors say, will never improve.
The infant’s health-care team at Cook Children’s Medical Center in Fort Worth says that every medical procedure it performs on her causes only more suffering and that she should be allowed to die naturally and peacefully. Her mother is begging for her daughter to be kept alive.
The emotionally charged decision about Tinslee’s fate fell to a Tarrant County district court judge, who on Thursday ruled in favor of the hospital. The girl’s mother, Trinity Lewis, said she plans to file an appeal of Judge Sandee Bryan Marion’s denial of an injunction.
“I am heartbroken over today’s decision because the judge basically said Tinslee’s life is NOT worth living,” Lewis said in a statement released by Texas Right to Life, an antiabortion group that has been advocating for Lewis. “I feel frustrated because anyone in that courtroom would want more time just like I do if Tinslee were their baby.”
While the battle over how long Tinslee will be kept alive plays out in the legal sphere, the case also evokes ethical questions of who should get to decide what kind of medical treatment is or is not in the best interest of a child too young to speak for herself. The saga contains echoes of the debate over Charlie Gard, a terminally ill British infant who died in 2017 after an international controversy over whether he should remain on a ventilator.
Politicians and activists across Texas have publicly staked out positions in Tinslee’s case. Gov. Greg Abbott and state Attorney General Ken Paxton, both Republicans, called the situation “complex and heartbreaking” and vowed to help Lewis exhaust her legal options to keep Tinslee alive.
Doctors initially planned to remove the infant from life support on Nov. 10 after the expiration of Texas’s “10-day rule,” which allows health-care providers to stop treatment after 10 days if they cannot find another hospital to take the patient. Cook Children’s said that its clinical team asked more than 20 facilities if they would accept Tinslee and that all said they could not correct her conditions.
The hospital on Thursday agreed to wait seven days to withdraw care so that Lewis could appeal the judge’s decision. “As they do, we will provide Tinslee the same level of intensive care as we have for her entire life,” the hospital said in a statement.
Tinslee suffers from several medical conditions, including a rare heart defect known as Ebstein’s anomaly, chronic lung disease and acute systolic heart failure. The hospital said in a court filing that she cannot get oxygen from her lungs into her bloodstream, and several surgeries have not been able to significantly improve this condition.
Tinslee also experiences “dying events” that require aggressive intervention two or three times per day. She has been in the cardiac intensive care unit at Cook Children’s since she was born prematurely last year.
“She is in pain. Changing a diaper causes pain. Suctioning her breathing tube causes pain. Being on the ventilator causes pain,” Jay Duncan, one of Tinslee’s doctors, said in court last month, according to the Associated Press.
Although Tinslee is deeply sedated, Lewis testified that she knows the personality of her daughter, whom she describes as “sassy,” according to the AP. Tinslee likes getting her nails done, squeezing her mother’s hand and watching the animated musical “Trolls,” Lewis told the court.
Attorneys for the hospital, however, said in a court filing that those descriptions are just memories of a past that cannot return.
“The undisputable situation is that, due to her grave medical condition, Tinslee is not sassy, does not like to watch ‘Trolls,’ does not watch TV, or enjoy having her nails painted,” attorneys for the hospital wrote. “No one holds Tinslee or cuddles with her.”
Public figures and organizations have fallen into sometimes surprising camps regarding the case. Paxton wrote to the court to argue that the Texas law that allows doctors to discontinue treatment violates patients’ constitutional right to due process. The Texas Catholic Conference of Bishops and the Coalition of Texans With Disabilities, among other groups, are backing the hospital.
Antiabortion activists often advocate for children like Tinslee to continue receiving life-sustaining care, which bioethicists said is largely because they see denial of treatment as a failure to acknowledge the inherent value of human life. In Tinslee’s case, however, antiabortion groups are divided. While Texas Right to Life took Lewis’s side, the Texas Alliance for Life and the Texans for Life Coalition have said they agree with the doctors.
In any case where doctors and a patient or surrogates for the patient disagree on treatment, the hospital’s ethics committee usually weighs in, said Ann Mongoven, associate director of health-care ethics at Santa Clara University’s Markkula Center for Applied Ethics. Many hospitals require their ethics committees to include chaplains and other community members with relevant perspectives, in addition to doctors and nurses, Mongoven said.
When doctors talk about whether a treatment would be “futile,” Mongoven said they should consider the odds that it would help and, if it did, the magnitude of the benefit. She said in Tinslee’s case, the chances of continued treatment helping and the size of the potential benefit both seemed very small.
Most doctors get little training on how to talk with families about expectations for treatment, said Mongoven, who has served on and advised medical ethics committees. She said health-care providers should discuss reasonable goals, whether that include sending the patient home or making the person’s death as comfortable as possible.
Charlie Camosy, a theology professor at Fordham University who studies bioethics, said the judge’s ruling about Tinslee indicates that the United States is moving back toward an attitude that doctors always know best after the country veered away from that perspective. He said doctors often misunderstand that many patients prefer length of life over quality of life, and tend to rate their patients’ qualities of life as worse than the patients do.
“Two things get conflated here: One is the medical expertise of the doctors, in which case, they do know best,” said Camosy, who has served on hospital ethics committees. “But determining whether this baby has a life that’s worth living has very little to do with your medical expertise. It’s an ethical question.”
Mongoven said she perceived the doctors’ mind-sets differently.
“They’re not saying that [Tinslee’s] life isn’t worth living,” she said. “What they’re saying is, ‘I am making her suffering worse, and my job is supposed to be the opposite.’”
Camosy compared a doctor’s moral qualms over continuing a patient’s treatment to a pharmacist who does not want to prescribe emergency contraception or a nurse who opposes abortion but is asked to help with one. He said in cases where people of goodwill disagree on what constitutes harm, he leans toward letting the patient or the patient’s surrogate decide.
Regardless of who ultimately decides for Tinslee, Mongoven said the heart of the matter is often obscured by public fighting.
“These cases get framed as political battles,” she said, “when in fact there’s a tragedy at the heart of the case that could pull people together.”