About a week ago, I was contacted privately about a situation that has since hit cyberspace very hard. A developmentally disabled girl, I was told, was being denied an organ transplant solely because of her disability. I made some private suggestions about what the parents might want to do to obtain help, but decided not to write about it until and unless the situation became public. It now has, and so I will opine. From the AP story:
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children’s Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year. Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition. “I put my hand up. `Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
We still don’t know that is what happened, or that the supposed decision to deny the transplant was based on quality of life.
But I think this does open the issue for discussion. Here’s how I see it:
Should a developmentally disabled person receive an organ transplant? All things being equal, yes. Under the same triage terms as all other patients. No preference given, but also no “quality of life” invidious denials.
Should disability ever be a cause for denial? Yes, but not based on supposed poor quality of life! Not based on a supposed reduced moral worth! Not based on a relative lack of societal utility!
Rather, if the disability is such that it triggers the usual disqualifying medical criteria that would also apply to an able bodied patient, it would be ethical to not provide the transplant even if it is the disability that creates the medical disqualification. For example, Mickey Mantle should not have received a liver transplant because he had metastatic liver cancer and would soon die anyway. If a developmentally disabled person’s disability created the same short life prognosis, it could be a legitimate ground for denial–if short life expectency would also disqualify an able bodied person.
In other words, a developmentally disabled person should be treated just like everyone else.
As to the case at hand, I don’t think we yet have enough information to make an informed judgment about what is going on. However, it could be a very important case. I will keep my eye on it and bring it up again if facts warrant.