An Alabama teenager with a terminal heart condition has not returned to school after a spate of hospitalizations because of what his mother says is a dispute with school officials about how he might die.
Alex Hoover’s case presents something of a legal loophole: His mother, Rene, has drawn up legal documents known as an advance directive to ensure the 14-year-old is not revived if he goes into cardiac arrest. But officials say they can’t follow that directive if his heart stops at school.
Rene Hoover does not want her son’s last days spent enduring a battery of medical procedures and medication as a result of his condition, aortic mitral valve stenosis. The condition causes the heart’s mitral valve to narrow and restrict blood flow.
“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.
Alex was hospitalized three times over the summer and hasn’t returned to class because Limestone County school officials have said they won’t recognize the advance directive.
His heart valve is too weak to keep up with his growth spurt, and his health has declined over the past year, his mother said.
In Alabama, do-not-resuscitate orders and similar directives apply only to people 19 and older.
Alabama Department of Education spokeswoman Melissa Valdes-Hubert said the agency has no policy on advance directives, and school staff must decide whether to follow parents’ orders. The school district’s special education director, Tara Bachus, told WAFF-TV that staff members would follow standard medical-response procedures in an emergency.
Guidelines from the National Association of School Nurses advise its members that do-not-resuscitate orders “should be evaluated individually at the district level with input from the school district’s legal counsel for consideration of state and local law.”
The nurses’ association also recommends that families of students with advance directives work with school nurses to develop individualized health-care plans.
But the American Academy of Pediatrics acknowledges that honoring the requests becomes complex because of the scarcity of school nurses and the frequent lack of supporting state legislation and regulations.
Major Concerns
A teacher visits Alex, who has autism, at home with lessons three times a week, and Hoover said she doubts officials will agree to allow her to take Alex to school for four hours a week while she sits nearby in case of an emergency. Calls and emails to school district officials from the AP were not returned.
Alan Meisel, the 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, school officials likely worry about the impact on students who could witness the teen’s death, Meisel said. Hoover said she simply wants her son to live as normally as possible.
“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.”
Republican state Rep. Mac McCutcheon said this case has him considering introducing legislation to allow advance directives to cover minors.
“What we’re trying to do,” he said, “is get the state into a position to recognize that there should be a law to help juveniles in these situations.”
McCutcheon said he’s researching legal issues surrounding advance directives and hopes to present a proposal in 2016.
