Medical officials at the University of Pennsylvania have denied an autistic man, 23-year-old Paul Corby, a potentially life-saving heart transplant, sparking outrage. It's essentially a "death sentence," says Jonathan Dobrer at the Press Telegram, and raises complex ethical questions about the medical community's right to decide who lives and dies. Given the dearth of available organs, doctors typically select patients with the highest chances of survival; living comfortably afterward isn't guaranteed. And Corby, whom Dobrer describes as "quirky and geeky," was judged a poor candidate. Here, a guide to the gut-wrenching debate:
Why does Corby need a new heart?
In 2008, his family learned that his left ventricle didn't close up properly after he was born. As a result, his heart doesn't pump the correct amount of blood throughout his body. Colby is currently taking 19 different medications to deal with his heart condition and quell his anxiety. In 2011, doctors told his parents that he needed a heart transplant to survive, but the family's application was denied.
Doctors reasoned that "given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effects of steroids on behavior," his application would be denied, wrote the Penn cardiologist in a letter to Corby's family. Available organs are already a scarce resource, and every year there are three to four times as many people waiting for a transplant than there are organs available. Doctors screen for candidates with the highest likelihood of survival. This case is controversial, however, because the denial is based on a mental rather than an anatomical problem that would more conclusively lower his chance of surviving the transplant. "The patient has to be able to take care of the new organ," says Sydney Lupkin at ABC News, ensuring it doesn't go to waste. With a mental disorder, the patient "could need to be restrained during surgery or rip out life-saving tubes and wires during recovery." Some patients, of course, go on to live close to perfect lives following the transplant surgery. But they need lifelong discipline to manage their post-op medication regimen, and the steroids they must ingest (the equivalent of drinking 20 to 30 cups of coffee) "greatly magnify emotions," says Stacey Burling at the Philadelphia Inquirer, exacerbating any anger or impulsiveness issues.
How did his family react?
Upon learning that her son wouldn't qualify for the list, his mother, Karen Corby, said she was shocked. "I was numb at first," she told ABC News, recalling the phone call she got from the hospital's cardiologist. "Before she hung up, she told me to have a nice day."
How bad is Paul's autism?
He's a high-functioning adult, says Burling. "He spends his days playing video games" and has even written his own self-published novel. Dr. Dan Coury of the Autism Treatment Network tells ABC News that Paul can conduct conversations, has a good quality of life, and "has a social network to support him," a key factor for any prospective heart-transplant patient.
Has anything like this happened before?
Yes. Earlier this year, a 2-year-old with Wolf-Hirschhorn Syndrome (a rare genetic condition that only effects 1 in 50,000) was denied a kidney transplant from the Children's Hospital of Philadelphia, similarly causing an uproar. But cases like these raise a thorny question: How are we supposed to handle individuals with disabilities when there aren't enough organs to go around? There's a "larger social issue here," says the Press Telegram's Dobrer. "Do we want to rule out autism spectrum people and lose a potential Mozart, Einstein, probably Thomas Jefferson and certainly Temple Grandin?" Do we really want to institute "death panels" charged with determining who lives, and who dies? Although there are "no guarantees with heart transplants," I hope the hospital finds that "it, in the end, has a heart. And I mean this in both senses."