This is a slightly tricky post for me to write. As my regular readers know, my position on vital organ donation is ambivalent at best and anti- at worst. I might be open to live donation of a kidney from a relative, though even there I have questions because of the dangers to the donor of going the rest of his life without one kidney. So-called "dead donor" donation is, really, a huge problem. You can see this page for many of my posts on that subject.
However, what has come out recently is sufficiently important that I think the donation issue should be set aside when discussing it. For one thing, live donation from a relative is what the parents are proposing and hope will be possible, and that is the most defensible form of vital organ donation. For another thing, the ramifications of what they have run into, especially just now in our national life, are much wider than organ donation.
The post that has kicked off a firestorm on the pro-life internet, which you may have already seen, is here. Here is the AP story. Briefly, parents of a mentally disabled child being treated a CHOP claim that, after the child's regular doctor gave them the impression that their child was eligible for transplant, they were expressly told in an interview with a doctor and a social worker that their child could not receive a kidney transplant because she is "mentally retarded" and because of her "quality of life." The social worker also cited the concern that in thirty years (if the parents themselves are dead by that time) the child would not take anti-rejection medications. Here are some quotations:
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.
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?”
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
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.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“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.
[The social worker] smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
Clearly, the mother is very upset (understandably so). I don't know if that is the reason, or if it is because the hospital has stolidly stated that it "does not disqualify potential transplant candidates on the basis of intellectual abilities," but even Wesley J. Smith has cautiously said that we "still don’t know that is what happened, or that the supposed decision to deny the transplant was based on quality of life."
Now, that seems to me to be going a bit too far in the caution direction. What we have even in the mother's blog post is what purports to be a word-for-word account of a conversation in which, the mother alleges, the doctor told her in so many words that the decision was based on the child's quality of life. That's evidence. If the mother did not make up or hallucinate that sentence by the doctor, the word for word sentence, "She is not eligible because of her quality of life, because of her mental delays," then a person in a central decision-making position has said that the denial of the transplant is based at least in part on quality of life and mental disability. It doesn't get much clearer than that, and the hospital really isn't in a very strong position to say that this simply didn't happen.
Perhaps the doctor shouldn't have been so frank. That gets the hospital in trouble. Or, one could argue, the doctor was speaking confusedly. It would, in fact, have made a lot more medical sense (and caused less of a firestorm) if the decision had been based squarely on the fact (which the social worker mentions in the recounted conversation) that Amelia will need another transplant in a little over a decade. Presumably that is the type of consideration that would be taken into account even for a potential kidney recipient who is a Nobel-prize-winning physicist. And the social worker did mention that factor. But she mentioned other things as well (to which I'll get in a moment), and the doctor didn't mention it at all. Besides, even if "quality of life" due to mental disability were only one factor among others, it shouldn't be.
If the conversation as reported took place, then we have a problem, Houston, and the hospital is stalling about admitting it.
There is additional, independent confirmation that the conversation is accurately reported. The Hastings Center says,
Some centers exclude patients with moderate mental retardation, HIV, a history of addiction, or a long criminal record.
Notice the confirmation here in two ways. First, Hastings just outright says that some centers exclude mentally retarded patients as organ recipients. Second, the mother recounts that mental retardation and brain damage were highlighted on lists the doctor was holding which included HIV. In other words, this appears to have been a list of exactly the sorts of contraindications (of which it is plausible that Hepatitis C would be another) the Hastings report describes, with Amelia's mental disability highlighted as the contraindication applicable to her case.
This detailed article discusses the fact that denial of organ transplant because of mental retardation is a long-standing issue in organ transplant. The AP article gets into this a bit as well, though I found the article independently. Here are a few quotations:
Prior to the 1990s, MR [mental retardation] was regarded as a contraindication for solid organ transplant operations (1, 2). The main concern was that people with MR, especially those with severe or profound MR, lacked the necessary cognitive skills to comply with complex post-transplant, antirejection medication regimens. As the number of organs available has been insufficient to transplant everyone with a medical need, some authorities felt ethically obligated to allocate organs based on the individual’s quality of life. People with MR were disadvantaged or not considered altogether for transplant operations because they were presumed to have a poor quality of life.
In 1995, Sandra Jensen, a 32-yr-old woman with Down syndrome, was initially denied a heart-lung transplant at Stanford University Medical Center and also at the University of California at San Diego (3). Hospital authorities rejected Jensen’s application because of her MR. Jensen’s advocates, however, obtained sufficient publicity and political support to persuade the Stanford Medical Center to reconsider.
Collins et al. (1) reported a case study of a 20-yr-old woman with an IQ of 55 who needed a heart-lung transplant. The hospital’s evaluation team denied the woman an opportunity to be listed for transplantation because of her cognitive limitations and concern about her potential to learn to comply with post-transplant medication regimens.
In their summary of indications and contraindications for heart transplants, Copeland and Solomon (2) stated that, “any mental or psychological condition which would make the patient unable to comply with a difficult medical regimen over the long term is an absolute contraindication to heart transplantation. Included in this category would be patients with psychosis or mental deficiency and also patients addicted to drugs.”
In 1995, the Patient Care and Education Committee of The American Society of Transplant Physicians (17) developed clinical practice guidelines on renal transplant candidates. These guidelines stated that MR should only be considered a contraindication to transplantation when the cognitive impairment is so severe that it impairs compliance with essential medical regimens. The guidelines also stated that support from family and/or caregivers can compensate for an individual’s inability to comply with medical regimens on his/her own.
Now, one can say that the doctor at CHOP is living in the past, prior to 1995. But say what one will, what he is reported as saying and what the social worker is reported as saying are exactly the sorts of things this article is discussing. Mental retardation as disqualifying because of presumed poor quality of life? Check. Patient presumed not to comply with the anti-rejection regimen because of mental disability? Check. The doctor and social worker don't seem to have gotten the memo from the guidelines about how family support can compensate for the fact that the patient won't take the medication on his own.
(What is also silly about this is that Amelia is so young right now that even if she were mentally perfectly normal her parents would have to give her her medications after transplant! Does transplant for mentally average children really normally depend on what they might be doing or forgetting to do approximately thirty years from now? What about a healthy forty-five-year-old who might develop Alzheimer's decades later and might then have insufficient support to continue taking anti-rejection medications for a previously successful organ transplant? The social worker's question seems to be, to put it mildly, rather a selective concern about this particular child.)
In any event, the resemblance between the considerations discussed in the article and what the parents report from the interview is so striking that I think there can't be much reasonable doubt that their report is accurate.
I hardly need to say what is disturbing about this. Many others have said it for me. I would add this, though: Organ transplant is the perfect little test tube for medical rationing. Rationing in organ donation is frank and straightforward. There are only so many organs to go around, so they are rationed. (Though I would note that if the family really can find a usable organ for Amelia which would be donated solely for her, this point is a lot less straightforward.) If it is acceptable now to ration life-saving medical care on the basis of mental retardation as a cause of "poor quality of life," this is extremely ominous for the future, as centralized medical rationing takes over more and more of our ordinary medical care. There are so many bad omens for the treatment of the disabled in the future that it might seem hardly worth highlighting this one, especially since in this area things may have improved for the mentally disabled over the past couple of decades (though no one seems quite sure about that). But I don't think we should drop the ball on this. Rationing is coming to the fore now more than ever as something advocates think should be the new normal in medical care in the West. When the public becomes aware of discrimination against the mentally disabled in medical care, even if that discrimination is "old news" to some, it's worth pointing out the ramifications. It isn't old news to most people. If it were old news to everyone, no one would be doubting the parents' story. And if it's going on now, I very much doubt that matters will improve from here on out. The contempt for the mentally disabled is far more likely to metastasize than to recede. For that reason, if for no other, Amelia's case bears watching.