In 2019, a mother faced a heart-wrenching dilemma. According to the letter she held in her hand, she had to find another hospital willing to treat her infant daughter, Tinslee Lewis, within 10 days—or Tinslee was going to die.
This dilemma arose because the intensity of Tinslee’s treatment and unfavorable prognosis from Cook Children’s Medical Center prompted the hospital to initiate a protocol stemming from an outdated and controversial Texas law called the 10-Day Rule.
Under that law, doctors can terminate life-sustaining treatment against the wishes of patients’ and their families after going through an ethics or medical committee review process. If the ethics committee concludes continuing care is “medically inappropriate,” then the patient and their family have only 10 days to find an alternative facility to provide care.
Historically, hospital ethics committees have been given vast discretionary powers over what can be considered medically inappropriate—to the point they could make superseding value judgments about a patient’s quality of life, regardless of the patient’s perspective and resources to pay for treatment.
In Tinslee’s case, 19 of the 22 members on the ethics committee were hospital employees who ultimately determined it was in infant Tinslee’s “best interest to allow her to die naturally” by removing her from life support. The kicker? As the hospital was turning Tinslee away, they refused to provide the care needed to safely transfer her to another facility—putting the unimaginably painful risk of transfer squarely on the family’s shoulders. Tinslee’s mom, Trinity Lewis, ended up getting support through patient advocacy services to safely transfer Tinslee to a new hospital.
Sadly, the Lewis family’s fight was not over, and had to turn to the courts. Trinity argued they were not given sufficient legal protections and challenged the hospital’s move to ignore her rights as a parent. After a long-fought legal battle, the U.S. Supreme Court denied hearing the hospital’s appeal, and the Lewis family walked away with a favorable ruling from the courts.
Tinslee’s mother stood her ground and fought for her daughter’s life and liberty against all odds. And as a result, Tinslee was able to go home alive, and the rulings in her court case set several legal precedents affirming that parents do have the right to pursue life for their children.
Tinslee’s case attracted statewide, national, and international attention. The reason? The whole debacle highlighted the perils of outdated laws that put hospitals’ discretion above a patient’s rights. Tinslee’s story not only exposed the undermining of patient liberty within the law, but also ignited efforts to have it amended.
Following Tinslee’s story, Texas state Rep. Stephanie Klick, a Republican from Fort Worth, helped passed HB 3162. The new law changed the ethics committee review process and gave patients 25 days to locate to an alternative health care facility after a hospital concludes it does not wish to continue life-sustaining treatment.
Most importantly, the new law provides a list of factors that ethics committees must consider and exclude when determining whether life-sustaining treatment is medically inappropriate.
The key exclusion? Ethic committees “may not make any judgment on the patient’s quality of life.”
There is merit in honoring a doctor’s moral and professional objection in continuing care for what they deem to be a “lost cause,” but it should never infringe upon a family’s freedom to define how they want to live. Doctors are medical experts with their own individual freedoms that need to be respected. However, no matter the expertise and well-intentioned prudence, these things should never be allowed to hinder Americans’ pursuit of life.
Tinslee’s parable should make people contemplate two things. One, there are still broken laws within our communities that don’t recognize liberty, and those laws will never deliver justice until someone challenges those laws. Two, while it may arduous, Tinslee’s fight shows us that our American legal and legislative institutions still work and the only way to improve them is by readily participating in them.
Tinslee’s mother not only saved her daughter’s life, but also helped spark positive legal changes that will benefit other Texas patients and families for years to come. Tinslee, who celebrated her 4th birthday in February, showed all of us that life is worth fighting for and their fight proved that every individual can change their state and their country, one life at a time.