A severely ill Alabama teen died Monday in the middle of a public controversy between his parents and school regarding his do-not-resuscitate order.
Alex Hoover, 16, of Athens, Alabama was born with aortic and mitral valve stenosis. He also had autism. Two years ago, when he and his mother, Rene, learned that his prognosis was poor, they created an advanced directive for him that included a do-not-resuscitate (DNR) order, the Daily Mail reports.
Officials at his school, however, said they could not follow the order and allow Alex to die if he experienced health problems during school. The local media began reporting on the controversy in 2015. Rene Hoover later pulled her son out of school, because it would not respect her wishes, according to the report.
On Monday, the family posted a message on Facebook indicating that Alex had died.
“Remember the love he has shown us all and the the amazing friendships that have been made. We will celebrate his sweet life,” Rene Hoover wrote.
Earlier in the day, his mother wrote online: “Alex won’t make it through the night. He has begun his crossing over. Everything is off. He is unconscious. His lungs are filling up. He’s been surrounded by beloved family and friends all day. Saying goodbye to my hero and my heart.”
Local news channel WAFF 48 reported in 2015:
His mother said his condition has grown worse. Hoover said his doctors told her that if he goes into cardiac arrest and his heart stops beating, the most humane measure would be to let him go.
“His entire life would be medications, surgeries, he would have no quality of life as a child. Ultimately, he would probably have to be sedated,” she said.
Rene got a legal advance medical directive, which she took to Limestone County School officials. It asks that if Alex’s heart quits, do not resuscitate him.
“They told us, ‘We’re going to put this in his record but we’re not going to follow this. We don’t have any policies.’ There’s no policy. There’s nothing on the books. Alex is, literally, the first case,” Hoover said.
Tara Bachus is the district’s Director of Special Education. She said with no law allowing schools to allow a child to die, the standard medical response team procedure would be followed, with all attempts made to save Alex’s life.
Alabama law does not recognize DNR orders for children under age 19, according to the Mail.
End of life decisions, especially involving children, are highly controversial in today’s society. Many closely followed the court battles over the late British infant Charlie Gard, whose parents were denied the opportunity to bring him to the United States for an experimental treatment. Charlie died on July 28 after his life support was removed, following a lengthy court battle between his parents and hospital. He would have turned 1 year old on Aug. 4.
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While pro-life advocates agree that there are cases when medical treatment is futile because people are dying, they also are troubled that some doctors appear to give up too early on patients. These medical teams’ excuse often is the patient’s poor “quality of life.”
But how do people judge a person’s “quality of life”? It is not a hard and fast definition. Some might define it as a person in a coma who is not expected to wake up, or a patient with an incurable, terminal disease; but people do wake up from comas long after their families lost hope, and children with diseases that doctors once thought terminal are surviving. U.S. Congresswoman Jaime Herrera-Beutler’s young daughter is one example. Pro-life advocates believe that human lives are intrinsically valuable and deserving of protection, no matter what their physical or mental quality.