Emilio Gonzales, a 19-month-old boy from Lockhart, Texas, died last weekend. His brief life and terrible illness tested a Texas law that would allow a medical team to discontinue treatment when it determines it would be futile. Although court proceedings were filed and intense public discussion ensued, the legal questions have not yet been resolved.

Emilio was diagnosed with Leigh’s disease, a rare neurometabolic disorder characterized by degeneration of the central nervous system. Patients with the condition are usually diagnosed between three months and two years of age, and seldom live beyond a few years. Emilio, born blind and deaf, had worsened to the point that he had been on a ventilator at Austin Children’s Hospital since December, 2006.

Texas has an unusual law, signed by then-Governor George W. Bush in 1999. It permits doctors to determine that continued care would be medically futile, and to give a patient’s family ten days to locate another facility to provide any additional care. If the patient has not been moved within that time the doctors can stop treatment—which in Emilio’s case would have meant turning off the ventilator and allowing him to die. Emilio’s doctors invoked the law, insisting that continued treatment was not only futile but also painful. Emilio’s mother Catarina Gonzales objected in court, arguing that as his mother she should be given the authority to determine whether treatment would continue. She also insisted that Emilio was not suffering, and that he responded to her touch and voice.

Travis County Probate Judge Guy Herman appointed a local attorney, Jody Helman, to serve as guardian ad litem for Emilio. Mr. Helman’s report largely agreed with the position espoused by the doctors and Austin Children’s Hospital, and indicated that they had followed all the procedures required under federal and state law. A hearing was scheduled for May 30; that hearing will presumably be vacated, as Emilio’s death makes the central issue moot. Ms. Gonzales is reportedly considering whether to try to pursue her position further.

Despite Emilio’s young age, he raises important issues for older patients. The medical, ethical and legal questions surrounding the concept of “medical futility” are much the same—and much more common—in older patients with debilitating and often terminal conditions. Ethicists debating Emilio’s case argue that families should make medical decisions, that health care providers should not be required to provide futile care, and/or that no patient should be forced to endure pain—or even treatment—if there is no prospect of recovery. Those same arguments can be applied in the care of young adults and seniors, as well.

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