Okay, so I was all set to start my tenure here with nice aesthetics post. Then a news story came up that just happens to involve disability, ethics, and medicine. The first two are my beat, and the third is Dr. Saunders’s. About this I must write!
My son’s syndrome is so ridiculously rare that most people who have it live nowhere near more than one or two other people who have it. So we family members all friend each other on Facebook. And let me tell you – the Ridiculously Rare Syndrome community is seriously pissed off this week. It all started when the mom of a kid with a different Ridiculously Rare Syndrome (Wolf-Hirschhorn Syndrome) wrote a blog post claiming that the prestigious Children’s Hospital of Philadelphia (CHOP) rejected her child as a candidate for a kidney transplant because of her child’s mental retardation – even though the family planned to donate the kidney. Infuriated special needs parents have been signing a petition and peppering CHOP’s Facebook wall with complaints. (CHOP has replied to the Facebook campaign here.) The story has now hit the MSM.
Two things off the bat.
First, CHOP has a great reputation. I have a friend whose child had Down syndrome and was treated at CHOP. He was considered and rejected for a heart and lung transplant for entirely medical reasons – his cognitive disability was never a factor. So I found this story surprising, and am, frankly, not 100% sure it is true. On the other hand, in my dealings with the medical community who treat my son, I have come across more than my fair share of doctors who went rogue and said outrageous and completely inappropriate things about my child’s quality of life. I mean, really seriously shocking things. So maybe surprised, but not shocked. But I suspect that if this is true, this is one crazed doctor, and not CHOP.
Second, if this is story is as told, it is not just outrageous, it is insane. Because while the scarcity of organs and quality of life is an issue (that will be discussed forthwith), the family had offered to donate the organ. So the doctor is refusing to treat this girl not because she is taking an organ away from a more-abled person. It’s just that he doesn’t seem to want to treat a child with mental retardation. Since we are not in the habit of exposing our disabled on mountaintops, we generally don’t deny medical treatment to the disabled. Even treatment that requires intensive follow-up, as families indeed seem capable of administering the follow-up care required to the cognitively disabled who receive transplants. (I mean, come on, we’re already caring for a disabled person, which is not exactly a hands-off, easy-breezy affair.)
I do think there is an issue worth discussing, however, about allocating scarce organs to the cognitively disabled. If I were wearing my mom hat, I would say that if my son needed an organ to survive, I would rather 10,000 otherwise healthy kids go without so that my son could live. With my philosopher hat on, however, obviously I recognize that is not tenable policy. So what is the policy? Um, there is no coherent one.
This should not be decided catch-as-catch-can. Doctors are not, on the whole, an especially ethically informed bunch (Dr. Saunders is, as he is in so many cases, an exception). The ethical training they have received, where received, is minimal. So I don’t think they should be in a position of deciding which patient of theirs merits treatment ahead of which others.
I am sympathetic to the view that mental retardation is a factor in quality of life, and should perhaps be a factor. I am hesitant, however, to consider it a strong reason not to donate organs (so, not the primary factor). My main objection is a slippery slope argument. Suppose we have one kidney and two patients. All is equal between Patients A and B, except Patient A has an IQ of 100 and Patient B has an IQ of 120. Is it immediately obvious that Patient B should get the organ? I suspect most people would resist this. We do not generally consider intellectual ability when considering rights and the value of life. Starting to consider potential productivity of a transplant recipient leads down a path that starts to seem a little…eugenic. There are also some factors in quality of life on which my son comes out ahead of less disabled people – he is extremely happy, experiences far more pleasure than pain, is sociable, and makes those around him happy. With an exception for those who have progressive neurodevelopmental disorders, or are profoundly disabled, I think cognitive disability should be given less weight than other factors, such as medical benefit.