NOEL KING, HOST:
In Fort Worth, Texas, an 11-month-old girl is in the hospital on life support. Tinslee Lewis is terminally ill. She has a rare heart defect. Her doctors say more treatment will not help her. They want to take her off life support. Tinslee's mom says it is not the hospital's decision to make. From Dallas, NPR's Wade Goodwyn has the story.
WADE GOODWYN, BYLINE: From the moment Tinslee Lewis was born last February and transferred to Cook Children's Medical Center in Fort Worth, her prognosis was poor. She suffers from severe heart and lung failure, which doctors say has become terminal. In July, the baby had to be put on a heart-lung bypass machine for several days. As fall came to North Texas, doctors in Cook's cardiac intensive care unit told the baby's mother, Trinity, that further medical treatment was not only futile but causing Tinslee to suffer, even with the pain medication.
JOE NIXON: The doctors began asking Trinity if she was willing to terminate the life-sustaining care. And Trinity maintained no, we need to keep trying. We need to keep trying.
GOODWYN: Joe Nixon is Trinity and Tinslee Lewis's lawyer and a former Republican representative in the Texas House. On the surface, this legal battle is about baby Tinslee's continued treatment. But underneath, this is also a political fight over Texas law, specifically the Texas Advance Directives Act. Here's Lewis's lawyer Joe Nixon again.
NIXON: I've always maintained that the culprit in this case is the statute. The hospital is providing life-sustaining care. The problem in this case is that there is a statute which allows a hospital, instead of the mother, make a decision on when life-sustaining care will be terminated.
GOODWYN: In 1999, the Texas Advance Directives Act was passed by the Texas legislature unanimously, amazingly enough, and signed into law by then-Governor George W. Bush. It was popular because it protects all the stakeholders. Patients can direct doctors to take every possible measure to keep them alive or instruct, if it's hopeless, let me go in peace. And hospitals have the right to withdraw artificial life support for terminally ill patients if further treatment has become, quote, "medically futile." But the anti-abortion group Texas Right to Life decided it had made a mistake supporting the law. Kim Schwartz is the organization's media director.
KIM SCHWARTZ: We believe in treatment pending transfer. So that says that, you know, if there is a conflict between the hospital and the patient or family, that's fine. Just continue treating the patient until you can find another hospital or doctor to take care of him or her.
GOODWYN: In this case, no hospital is willing to take the patient.
SCHWARTZ: Not yet. So we have been contacting tons of hospitals and are still getting lots of calls. Now, this isn't a lost cause.
GOODWYN: But transferring Tinslee Lewis has thus far been a lost cause and shows every sign of remaining so. Cook Children's Hospital has reached out to 20 major children's hospitals across the country. No hospital or doctor will agree to transfer and treat the terminally ill baby.
TIM FINE: They've all looked at the records. They've looked at whatever tests Cook showed them and said, yeah, there's nothing else we can do. For me, that gives me some comfort that Cook Children's has done all that should be done.
GOODWYN: Dr. Tim Fine (ph) is a palliative medicine specialist at University of Baylor Medical Center in Dallas. He's also one of the original authors of the Texas Advance Directives Act. He notes the baby has undergone half a dozen surgeries and contends doctors and nurses have the right not to be forced to administer treatment they believe has become hopeless and cruel.
FINE: And at some point, the surgeons should have the right to say, I'm not doing this again. I'm practicing medicine at a major transplant center, one of the larger transplant centers in the country. Patients and families come here seeking transplants. But, sometimes, the transplant community says, no, we can't give you that organ. We can't transplant you. You don't meet our criteria.
GOODWYN: Fine says that when it comes to critical care treatment, doctors must have the final say.
FINE: What would prevent any family from saying, well, we don't care whether you think we qualify for transplant - you have to give us a transplant?
GOODWYN: An element that's often left out of these stories is the jaw-dropping expense. Seven or eight figures tends to be the rule, not the exception. Take Jessika Scarborough's (ph) 8-month-old son, Jack, for example. While he's not terminally ill and just this week got to go home, like Tinslee Lewis, Jack spent most of his life in an intensive care unit. And like Tinslee, Jack had to be put on a heart-lung bypass machine. And what was baby Jack's medical bill for 2019?
JESSIKA SCARBRO: I can tell you exactly how much it costs. What was billed to my insurance was $46 million.
GOODWYN: Last month, the Texas chief justice ruled that the doctors taking care of Tinslee Lewis could remove her from the ventilator. But the next day, the Texas Second Court of Appeals granted an emergency stay of that ruling. As she approaches her first birthday, Lewis lies in Cook's cardiac ICU, pharmacologically paralyzed and heavily sedated. Her doctors predict even with artificial life support, she likely will not live to see her second. Wade Goodwyn, NPR News, Dallas.
[POST-BROADCAST CORRECTION: In this story, we incorrectly refer to Jessika Scarbro as Jessika Scarborough.]
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