Today the Associated Press shared the story of a terminally ill Alabama 14-year-old who can’t return to school because of a dispute with school officials over his advance directive. It’s a legal knot, and caught in the middle is Alex Hoover, who is autistic, and who suffers from something called mitral valve stenosis.

First of all, here’s how the Mayo Clinic describes mitral valve stenosis:

Mitral valve stenosis — or mitral stenosis — is a narrowing of the heart’s mitral valve. This abnormal valve doesn’t open properly, blocking blood flow into the main pumping chamber of your heart (left ventricle). Mitral valve stenosis can make you tired and short of breath, among other problems.

In Alex Hoover’s case, his compromised heart has been unable to handle his adolescent growth spurt, and his health is failing. His mother, Rene Hoover, faced with a devastating inevitability, “does not want her son’s last days spent enduring a battery of medical procedures and medication as a result of his condition,” says the report.

“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. A successful resuscitation and subsequent surgeries are unlikely to significantly improve the teen’s prognosis, she said.

“He would have to live his fears every single day,” Hoover said.

Rene Hoover drew up an advance directive to spare her son this fear and suffering, ensuring that Alex will not be resuscitated should he go into cardiac arrest. There are two tricky obstacles, though: Alabama does not recognize do-not-resuscitate orders or advance directives from people younger than 19 years old; and the Alabama State Department of Education has no policy on this sort of thing, and is therefore delegating responsibility for adhering to the Hoover family’s directive to school officials, as a choice. The local school board has declared that they will not honor Alex’s advance directive.

While Alex is unable to attend school, a teacher visits him three times a week for lessons at his home. Rene Hoover has proposed that she accompany him to school for a few hours a day, thereby relieving school officials of responsibility for his care in an emergency, but “she doubts officials will accept her proposal.”

As much as I want this to be a straightforward issue of a terminally ill person’s right to die, it is, as you might expect, more complex:

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.

Republican state Rep. Mac McCutcheon is reportedly considering introducing legislation to change Alabama’s position on advance directives for people younger than 19. It seems unlikely such an action could go through the legislative process, become law, and go into effect in time to help Alex Hoover.

“We want him to have comfort and peace,” Hoover said. “Emotionally, it is probably the hardest thing I think a human being could go through; knowing that you have to choose not if your child’s gonna die, but how your child’s gonna die.”

McCutcheon hopes to present a proposal in the next year.

[Associated Press]

Photo via AP