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.[snip]
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?”
[snip]
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.”
“Yes.”
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.
[snip]
[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.
[snip]
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.”
[snip]
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.
Comments (13)
The social worker and doctor are clearly far more severely handicapped than the child they are denying care to.
Social work is nothing other than totalitarianism in action, and it is no surprise that psychopaths and other morally handicapped people are drawn to that profession, and modern medicine is a product, to some real extent, of the philosophy that Mary Shelley satirized.
Posted by Steve P. | January 20, 2012 12:52 PM
"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."
Rationing isn't the "new normal" as it has always been there and is inevitable. As the recent experience in Arizona reminds us, if one needs a transplant and one doesn't have insurance one will be left to die. Price and availability are how scarce goods are allocated.
I see that her mother is a high school teacher so, no thanks to Chris Christie, the family likely has insurance but a question does arise:
If this was a poor family in Arizona, a state that has determined that Medicaid won't cover transplants, would we have had this post?
Another problem is that legally we can never get the information necessary for an informed decision.
""Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an email."
"But Happ and Caplan noted that it's virtually impossible to have a full discussion of Amelia's case because of medical privacy laws."
Lydia, cost is currently the most common method of rationing healthcare in the United States. Do you see that mode of rationing as problematic?
Posted by al | January 20, 2012 4:29 PM
1) I frankly will not waste my time with the moral equivalence garbage that uses the word "rationing" for "not giving everybody everything in the medical realm." As Wesley J. Smith has pointed out, this is a misuse of the term. It merely causes confusion to expand the meaning of the term in such a way that everything is rationing unless infinite medical care can be provided by shaking a magic wand.
2) Actually, I think contempt for the mentally disabled and a refusal to help them because they are mentally disabled is a special problem. That's why I'm writing about it. Stop trying to threadjack.
3) As to the e-mail from Happ, who cares? If they wanted to use other arguments related to her physical condition, they could have done that. The doctor chose to use pretty pink marker to highlight "mental retardation" and to tell the parents that this was the problem with authorizing transplant (even if a family kidney could be used) due to her low quality of life. The parents didn't sit down like good little socialist dhimmis and shut up. They spilled the beans. Now the truth is out there and the spin machine is trying to distract attention to other reasons that *might have been given* for the denial of the transplant. No way. I refuse to be distracted. I'm talking about the reason that actually *was given*, a reason that should not be used in that way *at all*.
Posted by Lydia | January 20, 2012 5:26 PM
The girl has Wolf-Hirschorn Syndrome, which apparently has a number of other side effects besides mental disability, including a life expectancy of 2 to 5 years. She's 3. Amelia can't walk, which leads to a huge increase in the risk of post-surgical complications such as pneumonia and infections, which her condition in itself makes more likely. We have only the mother's statement, which is almost certainly slanted to put the hospital in a bad light, creating pressure to allow the transplant. I have a great deal of sorrow for the Amelia's family; I can't begin to imagine having a child with such a horrible disease. It is commendable of the mother to fight for her daughter, but I cannot endorse this kind of 'court of public opinion' method, unless the family is going to release all of Amelia's medical records so that we can know exactly what risks and benefits there are to the surgery.
Posted by Karen | January 20, 2012 6:48 PM
Karen, this so-called "court of public opinion method" isn't actually going to make any final decisions to do or not to do the procedure. It is still going to be in the hands of people like doctors and hospitals. But through public opinion, maybe we can get the doctors to renew their commitment to health, and stop using foul and despicable criteria for who gets their services such as "she is mentally defective". Whatever the sound medical reasons are, they don't encompass "she's mentally defective" except as THAT condition affects the medical situation. Even though there is not enough evidence in the public's hands that we can rest assured that this is exactly what what was going on, there is sufficient evidence to point in that direction enough to give any sane, normal, loving person pretty strong concern. The medical field has absorbed a defective model of deciding criteria, and it does belong to the public to tell them so.
Posted by Tony | January 21, 2012 10:37 AM
Meaning she made up the words she attributed to the doctor? Meaning he didn't say that?
We don't just have some sort of opinion or gestalt impression from the mother. We have what purports to be a *quotation* from the doctor plus an eyewitness account of what he highlighted as contraindications on a list.
Either he said what is reported of him or he didn't. Either he gave that reason or he didn't. Either the social worker gave as a reason the concern that "when she's thirty" the girl wouldn't take her meds or she didn't give that reason.
I just do not buy vague references to "hearing only one side" or "the mother's account may be slanted." These are specific allegations of specific things that were said as reasons for denying the transplant, when those should not be reasons.
Either the mother imagined or made up her account or it is accurate. There isn't some sort of magical "context" that could make it okay for the doctor and social worker to use those reasons for a denial of transplant.
True, it doesn't follow that Amelia _is_ a good candidate for transplant. But _those_ are the wrong reasons for denying the transplant.
Posted by Lydia | January 21, 2012 1:16 PM
Tony and Lydia:
On the nose!
"Life Expectancy:"
It occurs to me that many people may draw false conclusions from Karen's statement that people with the syndrome have "a life expectancy of 2 to 5 years."
I'm skeptical as to whether there is enough data to even determine what their "life expectancy" is, but even if that information is accurate, without qualification that phrase means "life expectancy at birth." There is a very high mortality rate in the first two years of life, victims are often not diagnosed (incorrect diagnosis would undoubtedly lead to a higher mortality rate) and there is no reason to think that, for a child already over two years old, statistical "life expectancy" would be remotely meaningful for determining this child's prospects if she were to receive the transplant. If it were true that the doctor thought she would only live a year or two if she received the transplant, he would have said that rather than telling her that the reason for denying her transplant was her mental disability. Wolf-Hirschhorn children who survive infancy and who receive good care can be expected to live to adulthood, which explains the sociopathic-worker's question, "what happens when she is thirty and neither of you are around to take care of her?"
Posted by Steve P. | January 21, 2012 1:53 PM
Yes, it would be trying to have it both ways to worry about "what will happen when she's thirty" and also to deny the transplant on the grounds that she will live to be only five anyway!
Posted by Lydia | January 21, 2012 2:07 PM
There may be no more slimy a way of arguing for any kind of tyranny than to redefine, by either expanding to encompass everything or by contracting to encompass nothing, the definition of a word like "rationing." The trick is to make it so that the existence of the concept ceases to be distinguishable from its absence. An example of contraction, rather than expansion, is to claim that "there is no such thing as free will." Another might be the concept of "manufactured consent," that is the denial of the existence of free choices in a capitalist society, so that their replacement by bureaucratic authority is supposedly no real loss after all!
It's a debater's trick, and as I said, its a slimy one.
Posted by Sage | January 22, 2012 11:51 AM
First of all I agree that if things are as they are said, then this is bad. Furthermore I think even if the it turns out that the mothers testimony is inaccurate, that there is still grounds for conducting a serious investigation of the hospitals ethical conduct.
But with that said, are the two choices for the mother really only: She reported what was said with basically perfect recall, or, she crafted a story in a Machiavellian fashion to put the hospital in a bad light? Humans are known not to be perfect witnesses, and memories aren't like a tape recorder. They're stories, constructed from impressions, and they change every time they're recalled. Whole false memories can be constructed out of nothing. And there's hardly any correlation between the certainty that we have of a memory being true, and it actually being true. Court rooms aren't unfamiliar with cases were a blue car as reported by a witness turns out to be yellow. Case in point, Jenny McCarthy's stories about what happened to her child during an after a vaccination.
Is there any recording of the interview?
The mother could be perfectly honest, but she could have gotten a wrong impression, and now the story has grown in her head. Now that she's told it, she's more likely to recall it as true.
Which is why it seems odd me, that you suddenly throw out all other statements from doctors or the hospital. Why? If Happ's email is irrelevant, then why isn't the mothers statement? Why base the entire opinion you have of this case on that mothers testimony? Why do you trust the mother, over Happ, or the hospital? Call one a distraction, and the other not? Accuse the hospital of covering up and spinning things (without evidence), but asking that kind of evidence for the people who are hesitant on unquestioningly accepting the mothers testimony?
Posted by Leonhard | January 22, 2012 7:12 PM
Happ's e-mail is irrelevant because it simply states other criteria that might be used to deny this child a transplant, and that's not what I'm discussing. That's not what I'm after. For a lot of people, probably including the mother, this is chiefly about whether the child gets a transplant or not. For me, this is chiefly about whether mentally retarded individuals are being denied life-saving treatment on that basis. If there are other legitimate reasons not to give this child a transplant, that doesn't address the report that the doctor denied the transplant on the grounds of mental retardation.
Actually, I don't like vague references to "this might have grown in her mind" and the like. Nor is the allusion to a difference of car color pertinent. The nearest analogy I can think here to a difference of car color would be a slight difference of wording in the doctor's statement. For example, "Noo, she is not eligible because of her cognitive impairment" rather than "mental delays."
I have very great difficulty coming up with a scenario in which the mother is even _basically_ an accurate witness but in which the social worker and the doctor did _not_ tell her more or less in so many words that the transplant was being denied on the grounds of the child's mental retardation.
Nor did I base my entire opinion on the mother's testimony. You appear to have ignored a substantial part of my argument, which was the _independent confirmation_ of the mother's testimony by the fact that the _exact_ criteria she mentions are reported to have been _widely used_ to deny transplants to mentally retarded people for decades. This is a known issue. Indeed, her accuracy is confirmed by even the other, non-highlighted items on the doctor's paper, which fit with lists given at the Hastings Center.
Posted by Lydia | January 22, 2012 8:00 PM
The life expectancy issue is probably tied to the fact that renal (kidney) development in children with WHS is impaired by the chromosomal anomaly at the root of WHS. Hence the need for a kidney transplant.
Posted by Baron Korf | January 23, 2012 3:14 PM
I am not really someone from medical, but I think its really awesome to know about it.
Sadly. life expectancy is a factor that actually ~hard to know , hard to predict, and really not so good to be true. I guess if I was the who who survived with such a transplant~ I will just be really someone enjoying the 2nd life and live for the better.
Please view my blog by clicking here.
Sandra
Posted by Sandra | July 9, 2012 9:33 PM