I am very late in weighing in on this subject, but this article recently came to my attention: http://www.nbcphiladelphia.com/news/health/Mom-Claims-CHOP-Refuses-to-Give-Mentally-Disabled-Child-Transplant-Surgery-137437788.html
Basically, the story is about nearly 3 year old Amelia, a developmentally disabled child being denied kidney transplantation because of her mental retardation. I read this, and because of our situation, immediately realized which doctor it was whose unfortunate duty it was to discuss this situation with this mom (he's one of our favorites). And I've spent some time thinking about the entire situation.
I cannot currently find a link to the information I uncovered when I was initially researching transplantation for Babygirl, but I can very clearly remember seeing a list of candidate criteria that stated in so many words that certain people did not qualify for transplantation.
Incarcerated criminals. People without insurance (since the post-op medications are prohibitively expensive, and being unable to pay for them would lead to the loss of the donated kidney in a very short period of time). People with mental illnesses of such a degree that they could not reliably follow up. People with developmental disabilities such as autism or mental retardation who could not reasonably be expected to learn how to manage their medications without supervision. People in such poor health from non-transplant related illness that cannot reasonably be expected to live longer than their donated organ.
I can visualize this (ask my younger brother - he'll tell you I have this skill LOL) although I can't recall WHERE I saw it and can't find it now; but I remember pausing, mentally, to think about why such people might not be good candidates. But I confess I was focusing on whether or not Babygirl would be a candidate. After all, she really is the only one who matters, right?
I'm not going to argue that people with mental illness, criminal histories or developmental disabilities cannot have a good quality of life. Geniuses can have sucky lives. People with low IQs can have joyous, meaningful lives. People in prison can change, repent, become better people.
But in system which has over 114,000 people awaiting transplants, where only 3,375 donors made 6,838 transplants possible from January through March of this year (http://www.unos.org/), how on earth can 'fair' distribution take place? Shouldn't there be eliminating criteria?
Everyone who knows me knows that I'd walk on burning coals for my kids. I'd let a steamroller flatten me inch by inch if doing so would protect them from harm. And Lord knows I've struggled plenty with the "someone-else-has-to-die-to-save-my-kid" dilemma, and with the idea that my child could die waiting her turn.
I dearly love a child with autism, my sister-in-law's nephew. I could see his parents fighting to do whatever it takes to preserve his life. But I can see how close to impossible it would be for him to survive what Babygirl has survived. I can't see him safely managing dialysis. I can't see him easily and consistently being able to take medications. And there is no possibility that he'd ever be independent with these things, and every possibility that he'd fight it ALL.
The ultimate question isn't whether or not he DESERVES a kidney if he needs one - of course he does. The real question is whether or not the kidney would survive. If there are limited resources, the organs should go where they will do the most good and be expected to last the longest. I think it isn't merely about a person's quality of life. As the mom of a kidney recipient, I hate the idea that her kidney could have landed in someone incapable of caring for it - HATE the idea that her kidney could already be dead because they selected an inappropriate candidate while she still waits.
I had no real idea how hard it was going to be to manage a child after a transplant - and she's completely cooperative! After four months Hubby still struggles to understand the numbers and the meds, and he's no dummy. Babygirl will undoubtedly be able to manage independently with her medications eventually. She's not a genius, but she's practical. I have a very clear understanding NOW of why some people might not be viable candidates.
Sigh. That being said, if Amelia were MY child, I might make the same choices that her parents are making, just as loudly. And if Amelia were my patient? Dang, I don't even want to think about it.