Death to the Different?

Thomas L. McDonald over at God and the Machine wrote a great article earlier this week, Should Autism Be a Death Sentence?

He raises the serious question of who gets advanced health care in an age of rationing. The article centers around the plight of Paul Corby, a young man who suffers from autism and a potentially fatal heart condition. The question: Does autism disqualify Paul from receiving a heart transplant?

This leads us into the uncomfortable who-dies/who-lives decisions that “ethicists” toss around. Only this isn’t a hypothetical for Paul Corby and his family. It’s life and death.

Thomas L. McDonald’s excellent article says in part:

Paul Corby is 23, autistic, and suffers from a potentially fatal heart condition called left ventricular noncompaction. He’s high-functioning enough to have written and self-published a novel for pre-teens, but he also has severe social problems, is prone to emotional outbursts, and suffers from various psychological and developmental issues. He spends much of his day playing video games and never goes anywhere without a stuffed Princess Peach doll. Although he needs 19 different medications (many of them for his heart condition), according to his mother he handles his own med management. His heart problems are serious enough to warrant a transplant.

And the doctors at the Hospital of University of Pennsylvania think he should die. Welcome to the wonderful world of 21st century medicine!

No one denies that there is a shortage of organs for transplant. Rationing is a sad reality, and each year several hundred people die while waiting for organs. Please note, however, that those people died while waiting for a viable organ. Paul Corby has been told he’s not even fit to be on the waiting list. Because he’s autistic … read more here

 

  • http://www.philomenasmile.wordpress.com Anna Dawson

    I’ve been watching this story develop for the last week or so, since I have one son diagnosed autistic, and another son and myself have very strong Asperger traits, but I have a heart condition and there’s a 50/50 chance any of my children could have it. (My daughter, 2 in September, just had open heart surgery seven weeks ago and we joke that she and I are the bionic women of the family, with her pacemaker and my defibrillator.) All this to say, it’s scary to think that my intelligent, beautiful, most delightfully special and perfectly frustrating son could be rejected lifesaving treatment because he’s autistic. To those of us on the spectrum, that’s like saying, “You can’t have this lifesaving operation because you’re left-handed.” (I’d like to point out, not trying to have an attitude, that I kind of bristle at the words “suffer from autism”–generally autistics suffer from an overly neurotypical environment.) I understand the limitedness of transplantable organs–hearts come one to a customer and people don’t usually let go of them before they’re done with them. But a young man who is being treated for manageable emotional disorders, and has an extensive family support network, knows what is expected from him and has an idea how difficult this will be, ‘autism’ is not a valid reason to refuse him a chance at his life. This is not someone with no support or hope at home, or someone who is addicted to drugs or alcohol. I’m not saying he should be top of the list, but put the man on the list. He’s as well-equipped as anyone could hope to be and I challenge anyone who has one hope for life (such as a heart transplant) who has been denied that hope, to not struggle with depression.

    I hate to think that my sons could be so devalued by a neurotypical society that places worth on facets of human life, rather than the fact that the life *is* human. The downside of autism awareness is that “a little knowledge is a dangerous thing”–suddenly you have people diagnosing criminals based on a brochure and two minutes of news coverage, or else writing off someone on the spectrum as having no emotions and little humanity. That is not at all the case. People on the spectrum–adults as well as children–are so much more sensitive (physically and emotionally) than they outwardly appear to be.
    This is all kind of garbledy. I’ll be praying that he at least has a chance, or if they do still turn him away, it would be for *valid* reasons and not just a sweeping generalization about ‘autism.’

  • Rebecca Hamilton

    Anna, I agree with you completely. Thank you for sharing your experience. It’s powerful.

  • http://greenlightlady.wordpress.com Wendy Macdonald

    This reminds me of when I flew back to the my hometown 12 years ago to visit my sister who had Downs Syndrome. She was in the hospital apparently dying from double pneumonia and a stroke. When I spoke to my sister she roused and looked at me. Everyone was surprised!

    I asked if she was getting physio for her lungs to clear. It turns out nothing was being done! A young doctor was checking her out while I was there and I asked him about this. Thank goodness I showed up and gave my sister a voice. They began to pay attention to her and she lived another 8 years. ( until H1N1 got her). My daughter got to see her a few times and now I have passed on a love for the defenseless to my daughter… We must speak for those who cannot speak for themselves. Love means action… ~ Wendy

    • Rebecca Hamilton

      Wendy, I see more and more of this among doctors. Considering the power they have and the trust we invest in them, it’s frightening.