By Jonathan Dobrer
Should Paul Corby be allowed to die because he has autism? This is the simple question before the doctors at University of Pennsylvania Hospital. Their answer was: Yes. He does not warrant being saved by a heart transplant.
Let me disclose at the outset that I am not an objective reporter here. I worked with autistic children in the early 60s, I have a grandson with Asperger's Syndrome and my stepbrother lived a good and full life for nearly a decade and a half following a heart transplant. I take this case and the larger issues very personally.
While it is true that over 300 people die each year waiting for a heart transplant, Paul's autism is keeping him from even being wait-listed. Now to be fair (which I plan on being for a little while longer) heart transplants are not easy and patients do need to participate in their rehabilitation and ongoing care. Routinely people with major psychiatric or medical issues are turned down -- as are substance abusers. Since Corby has no other medical conditions and the substances he is on consist of 19 medicines prescribed to keep him alive, why he is being declined isnot clear, other than for his autism.
A spokeswoman for the hospital said, "The physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."
This is a phrase of such cruel and ironic bureaucrat-ese that it defies parody. Disclosing the reasons for allowing him to die would be "unkind" but allowing him to die is, well, what: Kindness itself?
Yes, Paul is quirky and geeky. He plays video games, has written one self-published novel and is working on another. He seems to have a mental and intellectual quality of life worthy of continuing. As a person with autism, he has developmental issues and is not always socially appropriate, according to our normal rules. None of his behaviors seems to warrant the death penalty, which is exactly what the University of Pennsylvania Hospital is imposing by its refusal to treat.
There is, of course, a larger social issue here. Who is worthy of living and dying? Do we "waste" medical services when they are given to people who are different by dint of some handicap or developmental issue? Do we want to rule out autism spectrum people and lose a potential Mozart, Einstein, probably Thomas Jefferson and certainly Temple Grandin? Do we want to have real "death panels" and come up with intellectual and emotional criteria for who shall live and who shall die? Do we want to take the chance of passive death panels that say your life is not worth saving becoming active death panels as happened when the Eugenics Movement of the 1920s devolved under the Nazis into the extermination of those not considered normal?
There are no guarantees with heart transplants. Some will survive surgery and go on to good lives, as my stepbrother did. Some will return to self-destructive life-styles. Some will be bad people and others wonderful and creative contributors to society. We have neither the tools nor the right to try to guess at the outcome of any individual life.
I hope the hospital finds that it, in the end, has a heart. And I mean this in both senses.