Wednesday, November 4, 2015


A mother in Alabama is making headlines as she fights to make one of the most difficult decisions of her life. Rene Hoover believes that her 14-year-old son, Alex, who has autism and a terminal heart condition that causes narrowing in the mitral valve, should be allowed to die if he goes into cardiac arrest at school. Unsurprisingly, Alex's high school does not agree.


Hoover and East Limestone High School stand in a gridlock. Hoover believes her 14-year-old son is able to make the end-of-life decision to not be resuscitated if his heart were to fail, even at school. The high school says it will not honor Alex's advance directive and will do everything in its power to save him. Hoover has also tried to sweeten the deal by requesting to attend school with Alex to make medical decisions on his behalf, but school rules limit how much time parents can spend on campus

It's pretty easy to see where the problem lies: What one mother is asking a school to do has the potential to make hundreds of parents really, really uncomfortable if their child witnesses another student's death. As a cultural rule, death is something we don't like to talk about. Death of teens and young children is something we like to talk about even less. Suffice it to say, most people aren't going to be OK with administrators allowing a teen to die in class.

That doesn't make Hoover's request wrong — not even close. We are seeing a few newsclips of a mom pushing to carry out her son's wishes during the final days of his life. But as Hoover has emphasized to the media, this isn't a decision she came to lightly. Asking the school to let her son die, if the situation arises, is the "hardest, hardest thing" she has ever had to do. She is doing it anyway because she believes it to be the best course of action for her son and her family.

The special needs student was hospitalized three times over the summer, Rene Hoover says she does not want her son's last days spent enduring a battery of medical procedures and medication as a result of his condition.
However, in Alabama do-not-resuscitate orders only apply to those over 19, and the school district says that standard medical procedures will be used in the event of an emergency with the young man.
The positions have left the two sides at a standstill, with Hoover not returning to school because Limestone County school board officials have said they won't recognize the advance directive.
Rene Hoover, who works as an emergency room technician, said that her son's heart valve is too weak to keep up with his growth spurt, and his health has declined over the past year.
She added that a successful resuscitation and subsequent surgeries are unlikely to significantly improve the prognosis.
'The last procedure we had done, it took us three weeks to get him to go to bed at night because he was afraid that if he went to sleep he would wake up and something would be wrong or that he'd be hurt,' Hoover told The Associated Press.
'He would have to live his fears every single day,' she said, and said that doctors told her that the humane measure would be to let her son die rather than revive him...
'He's a great kid and we really love him. We're working really hard with lots of different people to try and come up with good options for him to participate and be taken care of'.
Currently a teacher visits the student at home with lessons three times a week.
Rene Hoover said she doubts officials will accept her proposal to take her son to school for four hours a week on her days off while she sits nearby to make medical decisions.
The school has rules regarding how much time parents can spend on school property...
Alan Meisel, director of the Center for Bioethics and Health Law at the University of Pittsburgh, questioned whether the teen had the capacity to issue an advance directive.
'The fact that the person in question is under 18 simply to me makes it that much clearer that they need not honor the advance directive in this situation,' Meisel said.
Aside from liability concerns, school officials likely have concerns over the potential impact on students who could witness the teen's death, Meisel said.
However, Hoover said she simply wants her son to live as fully and normally as possible.
'We want him to have comfort and peace,' Hoover said.

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