Many people are tuning in to the story of a beautiful baby girl named Tinslee Lewis who has severe heart and lung disease and whose medical team has been fighting for her life since her premature birth at 32 weeks. Doctors say her illness is terminal, and prolonged medical intervention is causing pain and suffering with no hope for improvement.
The ethics committee at Cook Children’s Medical Center in Fort Worth, the facility that has wonderfully kept Tinslee alive since birth, agreed with the doctors’ assessment that the best course of action was to discontinue life-sustaining intervention causing her undue harm. Lewis’s family then sued Cook Children’s in state court seeking two things: First, that the judge order the hospital’s medical team to indefinitely continue the interventions keeping Tinslee alive, and second, that the judge declare the dispute resolution process in Texas law unconstitutional.
The hearing took place before Christmas in December, and staff from Texas Alliance for Life, which I founded, attended. It was a long day of extensive testimony from Tinslee’s mom, one of her five attending physicians, a nurse, and others. In-depth details of Tinslee’s condition were shared.
She is terminally ill, suffering from a severe case of Ebstein’s anomaly, a rare congenital heart condition, chronic lung disease of infancy, and pulmonary hypertension. She requires 24-7, one-on-one nursing care. Changing a diaper, even moving her slightly, can cause her to have a near-death “crash,” which happens daily.
Doctors have performed seven surgeries, three of which were open heart. She has multiple tubes, including a breathing tube. According to the physician who testified, Tinslee is expected to die within five months even with all available interventions. Since the hearing, the hospital released an update stating Tinslee is currently also suffering from severe sepsis, a dangerous response to infection.
The ethical question this case revolves around is: What do we do when there are disagreements between doctors and families in these rare end-of-life scenarios? What is the proper pro-life position? Should doctors follow the wishes of a family even when it means inflicting medical torture on a dying patient?
The Texas legislature unanimously passed and then-Gov. George W. Bush signed into law the Texas Advanced Directives Act 20 years ago to address these cases. It was the culmination of a year of drafting by a workgroup including National Right to Life, Texas Right to Life, Texas Alliance for Life, the Texas Catholic Conference of Bishops, and numerous organizations representing medical providers, all of whom supported it. All continue to support it, except for Texas Right to Life.
The Texas law respects the autonomy of the family to make medical decisions but also does not force doctors to keep patients alive using methods that are harmful to the patient, such as in the case here, with no hope of healing. The law has a dispute resolution process that encourages doctors and patients to talk. If they can’t resolve the issue, the doctor makes a decision.
The hospital ethics committee reviews that decision at a meeting the family can attend. The committee does not decide to keep or remove interventions. Rather, the ethics committee judges whether the interventions in question are “medically appropriate.” We believe it is a good process, among the best end-of-life laws in the country.
The goal of the law is to resolve disputes by transferring the patient. Unlike numerous states that allow doctors to override the family’s wishes after a mere “reasonable attempt” to find another doctor or no attempt at all, the Texas law requires the attending physician and the hospital to attempt to find another provider and continue the medical interventions for at least ten days.
In Tinslee’s case, Cook Children’s has done an extensive job. Over the last four months, they have contacted more than 20 of the nation’s best children’s hospitals, seeking to transfer Tinslee to a doctor willing and capable of performing the interventions her family desires. None has agreed to take over her care.
In the district court, Texas Alliance for Life, along with several other key organizations, including Texans for Life, Texas Catholic Conference of Bishops, Coalition of Texans with Disabilities, and several health-care providers, filed a friend of the court brief in the state court. This brief made two key points: first, the Texas Advanced Directives Act is good public policy, and second, it is constitutional.
After three weeks of deliberation, the district court judge ordered that interventions could be removed after seven days, without commenting on the constitutionality of the law. After hearing the facts of Tinslee’s condition, we don’t see how the judge could have ruled any other way.
Cases like Tinslee’s are not easy for anybody. The physicians have done everything they can do, and no one else is willing to take the case. Further interventions are prolonging her death and causing her further pain and suffering without the hope of improving her condition.
Our view, consistent with the law, is that the intent of withholding the intensive medical interventions is not to cause the patient to die. The goal is never death. The goal of removing the interventions is to prevent the pain and suffering resulting from interventions that lack any proportionate benefit, allowing the patient’s terminal condition to bring about a natural, peaceful death, with as much dignity as possible, which we believe to be the truest pro-life position.
