In 2019, Baby Tinslee Lewis was born prematurely with a rare heart condition called Ebstein’s anomaly and underdeveloped lungs at Cook Children’s Medical Center in Texas. She needed life support, including a ventilator to help her breathe.
The medical team began talking to her family soon after her birth about possible end-of-life care. Eventually, the medical team met with the hospital’s ethics committee and the committee agreed that it would be inappropriate to continue to treat Tinslee.
As HALO (Healthcare Advocacy and Leadership Organization) explains, this met the Texas 10-day rule for removing Tinslee’s life-sustaining treatment:
|TEXAS 10-DAY RULE|
The 10-Day Rule is a part of the Texas Advance Directives Act (§166.046). Basically, this “rule” allows a hospital ethics committee to decide to remove life-sustaining treatment from a patient against the patient’s or family’s wishes. The patient or patient’s decision maker (usually family) most likely, not professionals and are generally ill-equipped to defend their position. The committee follows with a written notice of its decision that life-sustaining treatment is “inappropriate.” Receipt of this notice marks the start of a ten-day countdown. “The physician and the health care facility,” states the law, “are not obligated to provide life-sustaining treatment after the 10th day after the written decision.” Finding another facility that will honor the patient’s/family’s treatment wishes and transferring the patient—at the expense of the patient and/or family—are monumental tasks which often prove impossible within the ten-day window.
The family was told they had until Nov. 22 to find a new hospital willing to take Baby Tinslee.
However, Tinslee’s family fought for her and they won a last-minute reprieve from a judge to stop the Texas hospital from taking the now 9 month old off life support against their wishes.
The hospital spokesperson stood by the hospital’s decision to end life support, saying:
“In the last several months, it’s become apparent her health will never improve,” and
“Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated.” and
“Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.
In July 2020, the hospital again wanted to take Tinslee off life support while Tinslee’s mother asked for another specialist to see her. The specialist recommended a tracheostomy to help her.
With help from individuals, lawyers and groups like Texas Right to Life and HALO (Healthcare Advocacy and Leadership Organization), Tinslee’s case was eventually taken all the way up to the Texas Supreme Court. Finally, this court ruled to keep Tinslee on life support. The US Supreme Court upheld the Texas court‘s decision.
Now, Tinslee has so steadily improved (see the pictures) that the hospital released her to go home to her family. She is now on a portable ventilator with a tracheostomy and home health care.
Texas Right to Life states:
“Tinslee’s success story shows that in the absence of an anti-Life countdown, families and hospitals can work together for the benefit of the patient. Tinslee has received excellent care from Cook Children’s Medical Center. It is with their efforts that Tinslee will now transition to home health care. Meanwhile, Texas Right to Life is committed to doubling our efforts in the Capitol and with our full-time patient advocacy team to combat and stop the deadly 10-Day Rule from destroying the lives of more vulnerable patients like Tinslee. “
I have been writing about medical futility problems for decades, especially about Simon’s Law to protect medically vulnerable children and their parents from medical discrimination, including my own daughter.
We need to send a strong message that medical discrimination against medically vulnerable or disabled people of any age based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.