In the cardiac intensive care unit at Cook Children’s Hospital in Fort Worth, Texas, is 11-month old Tinslee Lewis. Born prematurely in 2019, Tinslee has multiple health conditions including chronic lung disease, acute systolic heart failure and Ebstein’s anomaly, a rare heart disease. Ebstein’s anomaly is a defect that doesn’t allow the tricuspid valve located between the right atrium and right ventricle to work properly. Resulting in blood leaking back into the tricuspid valve and into the right atrium. This makes the heart work less efficiently possibly leading to heart failure or an enlarged heart.

Tinslee lay paralyzed being kept alive by a ventilator and a host of medications. Although doctors say her condition isn’t going to improve, Trinity Lewis, Tinslee’s mother is fighting to keep her alive. Cook Children’s Medical Center health-care staff says that medical procedures performed on Tinslee cause more suffering and that she “should be allowed to die naturally and peacefully.” In a court filing by the medical center, “Tinslee cannot get oxygen from her lungs into her bloodstream, and several surgeries have not been able to significantly improve this condition.”

At the center of this situation are two conflicts. One that may be settled sooner rather than later, and another that will be the center of health-care debates anytime doctors and the courts decide who lives and dies.

Originally doctors were going to remove Tinslee from life-support on November 10, 2019 after Texas’ Advance Directives Act, also known as the 10-day rule expired. Current conflict rests in Section 166.046 of the Texas Advance Directives Act, codified in Chapter 166, Texas Health and Safety Code. The section states “When an attending physician refuses to comply with an advance directive or other request for life-sustaining treatment because of the physician’s judgment that the treatment would be medically inappropriate, the case will be reviewed by an ethics or medical committee.  Life-sustaining treatment will be provided through the review…If after this review process both the attending physician and the ethics or medical committee conclude that life-sustaining treatment is medically inappropriate and yet you continue to request such treatment, then the following procedure will occur: 

1. The physician, with the help of the health care facility, will assist you in trying to find a physician and facility willing to provide the requested treatment.

3. The patient will continue to be given life-sustaining treatment until the patient can be transferred to a willing provider for up to 10 days from the time you were given both the committee’s written decision that life-sustaining treatment is not appropriate and the patient’s medical record.  The patient will continue to be given after the 10-day period treatment to enhance pain management and reduce suffering, including artificially administered nutrition and hydration, unless, based on reasonable medical judgment, providing artificially administered nutrition and hydration would hasten the patient’s death, be medically contraindicated such that the provision of the treatment seriously exacerbates life-threatening medical problems not outweighed by the benefit of the provision of the treatment, result in substantial irremediable physical pain not outweighed by the benefit of the provision of the treatment, be medically ineffective in prolonging life, or be contrary to the patient’s or surrogate’s clearly documented desires.

5. If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. Source

Cooks Children’s Medical Center says they have reached out to 20 medical facilities to see if they would accept Tinslee, but all said they “could not correct her condition. On Thursday January 30, a Tarrant County district judge ruled in favor of Cook Children’s decision to end treatment of Tinslee. In a statement released by Texas Right to Life, Trinity Lewis said “I am heartbroken over today’s decision because the judge basically said Tinslee’s life is NOT worth living”. Also on Thursday Cook Children’s said they would wait 7 days before ending treatment in order to give Lewis the opportunity to appeal the judgment. But, on Friday an emergency relief was granted by a Fort Worth appeals court, which Texas Attorney General Ken Paxton announced on Twitter.

Since Tinslee was born prematurely on February 1, 2019 she has been a patient in Cook Children’s cardiac intensive care unit. It is the place where medical staff says Tinslee has “dying events” multiple times a day that require “aggressive intervention”. Jay Duncan, a doctor of Tinslee’s said “She is in pain. Changing  diaper causes pain. Suctioning her breathing tube causes pain. Being on a ventilator causes pain.” Associated Press

The other issue at conflict is who gets to decide who lives or dies in situations where the patient cannot express their wishes? Should doctors and medical staff be forced to treat a patient knowing the procedures, although prolonging life, expose a patient to extensive pain and suffering but will not cure the patient? What does this do to the mental state of doctors and medical staff? Even though every life is priceless, what do such situations do to the price of health care? Are decisions made differently for those that pay a private insurer versus those that receive government run health care? While the health care issue in America seems to have been forgotten by our politicians, these questions and more will have to be answered in the very near future.

James Cheef