A few years ago, doctors in the United Kingdom decided to remove a dying baby named Charlie Gard from life support. Charlie had a genetic disease and because doctors believed his case to be hopeless, based on their “quality of life” view, they determined that continuing to live was not in the baby’s “best interests.”
Charlie’s parents opposed the plan. They wanted to bring their son to a New York doctor who believed he might be able to help Charlie. It was a long shot, to be sure, but one Charlie’s parents wanted to take. But the UK courts said no. His life support was removed over their objections, and Charlie died on July 29, 2017.
The next year, another young Briton named Alfie Evans faced nearly identical medical obstinacy. Alfie had fallen unconscious. After months of trying to help him — and though Alfie’s underlying disease remained undiagnosed — doctors insisted on taking him off life support. His desperate parents found an Italian children’s hospital willing to continue care for their son. But the doctors did not want that, either. The courts agreed that removing life support was in his best Alfie’s best interests, and he died soon thereafter.
Tinslee’s doctors prevailed in the bioethics committee and, after the hospital failed to find another facility willing to take her, planned to end all but comfort care.
Some who heard about those overseas cases assumed that such medical authoritarianism was a byproduct of the UK’s socialized health-care system and could not happen here. But the real culprit isn’t how medical care is funded, but instead a growing acceptance in medicine and bioethics of a “quality of life” ethic that deems some lives best ended — even when the patient or family believe that fighting on is the best course.
Recently, a COVID-19 patient named Michael Hickson, who was quadriplegic, was denied curative treatment in an Austin hospital, not because it had no chance of working but rather because his doctors believed that saving his life would not ameliorate his disabilities and thus was “futile.”
Now, a case strikingly similar to those of Charlie Gard and Alfie Evans is unfolding in Fort Worth, where doctors at Cook Children’s Medical Center are seeking to both force a baby off life support and prevent her mother from pursuing alternative care.
Here’s the story: Tinslee Lewis was born one and a half years ago with serious heart troubles and diagnosed with severe pulmonary hypertension. She has had repeated “dying episodes,” from which she was saved. Cook Hospital doctors now believe that continuing intensive care causes her unnecessary suffering and is therefore “futile.”
Trinity Lewis, Tinslee’s mother, disagrees vehemently. She wants Tinslee maintained in the hope of finding a better medical approach.
But in Texas, that decision isn’t necessarily up to her. The state’s “futile care” law permits doctors to take such conflicts to a hospital ethics committee for a behind-closed-doors adjudication. If the committee determines that life-extending treatment is “inappropriate,” the patient/family have a mere 10 days to find alternate care before doctors may unilaterally remove the patient from life support.
Tinslee’s doctors prevailed in the bioethics committee and, after the hospital failed to find another facility willing to take her, planned to end all but comfort care. Their plan was thwarted when Trinity obtained a temporary reprieve from a court. Meanwhile Protect TX Fragile Kids, a nonprofit organization dedicated to advocating for seriously ill and disabled children — along with Texas Right to Life — searched the country on Trinity’s behalf desperately looking for a doctor or facility willing to take over Tinslee’s case.
They hit pay dirt. A Michigan doctor named Glenn E. Green, a professor of head and neck surgery who has developed an innovative form of care for children with significant breathing difficulties, reviewed the baby’s medical records and concluded that not only does she not suffer from pulmonary hypertension — an opinion joined by an outside cardiologist who has reviewed the case — but that he might be able to successfully treat her condition. Dr. Green testified in a written declaration under penalty of perjury in support of Trinity’s request for a court order compelling Cook Hospital to permit Dr. Green to perform a tracheostomy so Tinslee can be moved:
Baby T.L.’s condition is not definitely hopeless. More can be potentially done to treat her breathing difficulties and even her underlying condition. It is in her best interest that she be put in a position to be moved from Cook Children’s Medical Center to a palliative care facility. To be clear, when I use the term “palliative care” it is to mean facilitating life with a serious illness.… It is not hospice or a means of facilitating one’s death or passing.
So, what’s the holdup? Isn’t that what the Cook Hospital doctors wanted?
Apparently not. The hospital has filed an extensive legal opposition, stating, in part, “A tracheostomy will not change the anticipated trajectory of T.L.’s congenital heart disease, severe chronic lung disease, pulmonary hypertension, or significant pulmonary infectious issues.” Accordingly, the hospital argues, it would be “unethical surgery” to proceed as Dr. Green recommends and Trinity desires. If Cook Hospital’s legal position prevails, it will take Texas law a giant step beyond the state’s already coercive futile care statute to enabling doctors to thwart patient/family’s decisions to pursue reasonable alternative medical approaches in place of ending life support.
So, whose baby is Tinslee Lewis anyway: the mother’s or the doctors’? Who has the final say about medical treatment in extreme cases, patients and families or bioethicists? Judge Sandee Marion of the District Court, Tarrant County, will soon answer that crucial question in a legal case that could determine whether UK-style quality of life authoritarianism successfully invades the United States.
Award winning author, Wesley J. Smith, is chairman of the Discovery Institute’s Center on Human Exceptionalism and a consultant to the Patients Rights Council.
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