A Texas hospital wants to end treatment for a terminally ill 10-month-old girl against her family’s wishes, triggering a debate over a state law that opponents say gives medical professionals more power than parents.
Last week, Texas Fourth Court of Appeals Chief Justice Sandee Bryan Marion granted Trinity Lewis, the mother of Tinslee, until Jan. 2, 2020, to find another healthcare facility to care for her daughter before allowing Cook Children’s Medical Center in Fort Worth to withdraw life-sustaining measures.
Tinslee has been at Cook Children’s since February when she was born prematurely with a rare heart defect, chronic lung disease, and severe high blood pressure. Since July, Tinslee has required sedation, ventilation, and extracorporeal membrane oxygenation (ECMO), a machine that oxygenates the blood in place of the heart and lungs.
The hospital relied on the state’s “10-day rule,” which is intended to go in effect when a family and doctors differ on ending a patient’s life-sustaining treatment. The law states that if the hospital cannot find another facility to provide treatment for the patient within 10 days, doctors can remove life support with the approval of the hospital’s ethics committee.
Officials at Cook Children’s said they have asked more than 20 facilities to take Tinslee under their care, but they all agreed that further treatment is futile. Pro-life groups are split on this case.
Texas Right to Life is among the groups helping the Lewis family find another place to take Tinslee before time runs out. Tinslee’s family maintains she needs more time to get better. Her mother said that despite her daughter’s sedation, she smiles, squeezes her hand, and indicates likes and dislikes.
Sixteen Republican state lawmakers sent Gov. Greg Abbott, also a Republican, a letter, asking him to call a special session to repeal the 10-day rule. They called the law “unethical” and “unjust,” adding, “The decision to love and care for a family member with long-term health complications and disabilities belongs to the patient and her family––not a hospital committee.”
But the doctors and nurses at Cooks Children’s who have been caring for Tinslee told the judge she is suffering and in pain. Texas Alliance for Life director Joe Pojman supports the state’s 10-day rule and joined other pro-life groups in filing a friend-of-the-court brief last week supporting the hospital’s decision to remove Tinslee’s life support.
Pojman said his group attended Tinslee’s court hearing and listened to eight hours of testimony, including medical staff who described her condition as worsening and terminal. “We go to the mat for life every day,” he said. “But that does not mean that we want patients to suffer with medical torture merely to prolong their death.”
Rosemary Stein, a pediatrician from Burlington, N.C., and a member of the Christian Medical and Dental Associations, disagreed. “Suffering is a sign of human life … a sign that Tinslee is not in a vegetative state,” she said. “She brings smiles and joy to people. … I can’t see that pushing a button to end her life is humane.”
Stein said in her nearly three decades of treating children, she has seen many who survived rare and seemingly hopeless diagnoses. Doctors kept some alive with ECMO—though none for as long as Tinslee—and even pronounced them dead several times, Stein said, adding, “Infants’ ability to recuperate is incredible. As doctors, we think we know which ones will survive. … I’ve learned to trust a mother’s intuition.”
Tinslee’s difficult case resembles others in recent years, including Charlie Gard and Alfie Evans, two children who died in British hospitals after doctors removed life support against their parents’ wishes.
Matthew Eppinette, director of the Center for Bioethics and Human Dignity, said these cases highlight the need for an outside ethical review committee, one without ties to the hospital, to help families and doctors come to an agreement. He said that Texas’ 10-day rule seems to give hospitals “a great deal of decision-making power.”