Baby Emilio: Court Orders Treatment to Continue—For Now

Under the terms of Texas law, hospital ethics committees have the right to unilaterally vote to refuse wanted life-sustaining treatment. Known as “futile care theory” or “medical futility” or “inappropriate care,” such refusals are permitted to be made on quality of life judgments, not just whether the desired treatment would work.

Because of this statute, Texas has become ground zero for futile care theory. Happily, several attempts to impose the law have been thwarted by public pressure. Now, a court has issued a temporary restraining order preventing Children’s Hospital of Austin from removing Baby Emilio from life support. Doctors claim the boy is suffering, but note from the following quote in the story, they also say he has lost all higher brain functions:

Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, said Michael Regier, general counsel for the Seton Family of Hospitals, which includes the children’s hospital.

Emilio is believed to have Leigh’s Disease, a progressive illness difficult to diagnose. He cannot breathe on his own, must have nutrition and water pumped into him, and can’t swallow or make purposeful movements, Regier said. He said Emilio’s higher order brain functions are destroyed.

Consider the lines I italicized: Life is what doctors assert is without “medical benefit.” But to state that helping a patient continue to live when that is what the patient/family wants is not a proper purpose of medicine when the patient/family wants it to be extended, is to turn medicine literally on its head.

I might not have made the same decision as Emilio’s mother has, but that is irrelevant. This is a value judgment. Members of ethics committees should have no right to impose their values over those of patients and families.

Let us hope the Texas Legislature revokes Texas’s misbegotten futile care law.