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.
Just last week we saw the same dilemma in the story of a terminally ill 5-year-old, Julianna Snow. Snow’s parents were hit with a tidal wave of judgment when they backed their young daughter’s decision to die at home the next time she got sick enough to go to the hospital. A choice that many parents considered child abuse was also a choice Julianna’s parents didn’t come to lightly — they believed they were making the best decision for their daughter.
When you think of it that way, that these parents are just trying to do right by their very sick kids, Hoover’s request of the school has nothing to do with ethics. Parents and school administrators are worried about what will happen if a child witnesses another child’s death, but they’re failing to consider the most important fact: Alex’s life matters too.
In what may be the last days of his life, a child should have a right to continue his education and keep up his social life, even with the risk of death at school.
Whenever highly debated stories like this make the news, it’s easy to miss the forest for the trees. That is to say, it’s easy to get stuck on the intangible political topic of end-of-life care and forget that we are talking about a real person — a teenager — here. Hoover’s fight against the school isn’t about championing a bioethics cause. Hoover says she just wants to make her son’s last days as happy and as comfortable as possible, and any parent can understand that.