Should a young girl be denied a transplant because of her mental disability?
(KAREN BLEIER - AFP/GETTY IMAGES)
The Facebook page of Children’s Hospital of Philadelphia is being bombarded with comments. The story is exploding in the mainstream media. The Twitter hashtag #teamamelia has received rapid fire commentary from all over the world. A petition from Change.org has procured tens of thousands of signatures in only a few days.
What event could possibly have created such energy? According to the mother of three year old Amelia Rivera, it was their hospital’s decision to deny their daughter a kidney transplant-on the basis of her mental disability. Here is Mrs. Rivera in her own words:
I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia. We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.
***
The doctor begins to talk and I listen intently on what he is saying…He gets about four sentences out (I think it is an introduction) and places two sheets of paper on the table…In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV.
Then, confirmation of the unthinkable:
Noooo. She-is-not-eligible -because-of-her-quality- of -life-Because-of-her-mental-delays” He says each word very slowly as if I am hard of hearing.”
***
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
The hospital’s Facebook page claims that they do not discriminate on the basis of disability, but unless Amelia’s mother is lying or misremembering (and as I have said elsewhere, these are possibilities we should take seriously before making a final judgment) then that policy has been violated. If the decision to abandon Amelia was based on something other than mental disability, the hospital could highlight such reasoning in the abstract and explain that there are medically-indicated reasons (heart problems, complications with using immunosuppressant drugs, etc.) why a child with this kind of disease would not be a good candidate for a transplant without violating confidentiality.
But this is not what happened--at least according to Mrs. Rivera. Her child, despite the fact that the family has donors ready (though having fellow children in the family donate a kidney is a very complicated ethical situation in its own right), appears to have been rejected as a transplant candidate based on her mental capacity. Apparently there is actually a form which has a box for ‘mentally retarded’ which can be checked as a legitimate reason for denial. This suggests that the decision was based on an institutional policy, and indeed, over ten years ago a Salon article highlighted the fact that children even with Down syndrome often cannot get lifesaving transplants simply because they are mentally disabled.
Unfortunately for this hospital and medical team, last week they ran into stubborn parents who, instead of abandoning their disabled child, decided to fiercely to defend her life. Doing so in the age of social media, and during a time when both liberals and conservatives are skeptical of attempts to abandon disabled children, has created a perfect storm of outrage such that this hospital’s decision will likely need to be publicly explained.
In the meantime, however, should we really be so surprised at this story? This decision at least appears to be based on a general judgment that certain human beings are worth less than others, and a particular judgment that Amelia is worth less because she lacks a certain mental capacity. This follows logically from similar kinds of judgments routinely made in other medical contexts (aiming at the death of patients in a so-called vegetative state, abortions-even late in pregnancy-of mentally disabled fetuses with Down syndrome and other mental disabilities, etc.) that do not cause this kind of public outrage.
But if we want to push back against a medical culture which allows this to happen to vulnerable three year old girls, we need to do so consistently for all vulnerable members of the human family who are considered to be less valuable because they lack a certain mental capacity. Vulnerable populations require our special attention and protection not least because of the reasoning that was apparently used in the decision to abandon Amelia Rivera.
Charles C. Camosy is Assistant Professor of Christian Ethics at Fordham University in New York City and is the author of “Too Expensive to Treat?” and “Peter Singer and Christian Ethics.”
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