No transplant for little girl with mental retardation

[Gravekeeper]

There must be more to this story. Because the only source is mom's blog, the only one's picking it up are other outraged blogs, and not a single news outlet has touched this one despite the outrage potential they love so much. Nor has the hospital commented at all ( and if this was true as is, they'd be be at the forefront of the apologies I imagine ).

Something's missing. >.>

[Panacea]

unless there is a reason he would be fired or lose his medical license its a personal choice of the dr not wanting to do so. or at least wanting to spare the parents a possible loss? again not his call

I've been unable to get onto the blog to read the details, but here are my thoughts on the issue based on what I know about transplants.

I'm not clear on who this physician is. Is he her regular doctor? Or a transplant surgeon? Only a very small cadre of surgeons actually do transplants.

It will take her family doc to put her on the list. Even if it is a family kidney, if it is not an exact match, the girl will have to take anti-rejection medications that can have awful side effects. He may be wondering what will happen if the parents are not able to get her to take the meds, which do not come in happy cherry flavors.

That's the issue with the mental retardation. Transplant candidates get a pysch eval to ensure that they can comply with the aftercare regimen. Even normal adults are turned down if it is determined they can't comply with the regimen. Continuing addiction is the usual reason in the case of adults.

I don't think the mom gave the full story, and I believe the parts left out at least *might* make it more reasonable. But looking at what is in there, but passed over: HIV.

HIV is a contraindication to transplantation. These folks already don't have much of an immune system, and the anti rejection drugs will suppress what little they have left.

Yes, but the doctor, at least according to the blog, is making it sound like he won't do the operation because the girl is mentally retarded. This has some serious consequences. Does this mean all mentally retarded/developmentally delayed/whatever else people will be denied transplants? The mother said she did research. Hers isn't an isolated case. Hospitals are denying transplants to loads of mentally retarded children/people. This makes me

I understand the emotion. But really it is an issue of being able to comply with the aftercare requirements, which are considerable. Persons who don't have the mental capacity to do this are not considered good candidates in the face of many more who CAN comply. Organs are too few to waste on a patient who will kill the organ because they don't take their anti rejection medications, or engage in other behaviors like drinking or drugs that will kill the organ. Severe mental retardation does not make you a good candidate.

A family member would be donating the kidney. It would not be "on the market" at all if the girl didn't need it, so it's not taking one away from anyone else.

Also, from what I can gather of their blog, the WHS is the only health issue the child has. I believe the "Hepatitis C" and "HIV" are other reasons for denial of a transplant, and if that is the case, then the whole thing is a load of outdated bullshit, since it's been shown (the report I found was from 2006) that being retarded has no appreciable affect on kidney transplant recipients for acceptance or survivability.

^-.-^

Do you have a link to this report? I'd like to see it.

Organs are never on the market in Western countries. It is illegal anyway. But continuing care is still an issue.

I don't know enough about this case to render an opinion on the ethics. But I think there is more to the story than has been told.

Just reading that account makes me wonder if there's something that the mother's missing out. For one thing, the doctor would be risking his livelihood if he refused the transplant purely under the grounds of a disability; that's against the law.

http://en.wikipedia.org/wiki/America...es_Act_of_1990
.

The ADA doesn't apply to this kind of case. Physicians have discretion to determine who is or is not a candidate for transplantation. They aren't required to render care to anyone in the first place. You can't sue a doctor for saying, "I don't want to be your doctor."

You'd have to prove the doctor violated the standard of care. Which would be very hard to prove in a case like this.

The mother could always go to another doctor. Makes me wonder why she hasn't. Or maybe she has and she's leaving that part out. We really don't know.

[Andara Bledin]

I'm not clear on who this physician is. Is he her regular doctor? Or a transplant surgeon? Only a very small cadre of surgeons actually do transplants.

I don't believe it's her normal surgeon, although it is a surgeon that's at the same hospital where the child is cared for. The mother actually has rejected a number of regular healthcare workers on grounds that they had no faith in the child's ability to survive or improve.

He may be wondering what will happen if the parents are not able to get her to take the meds, which do not come in happy cherry flavors.

The child is already taking a variety of meds, including the anti-seizure meds that have successfully controlled her seizures.

Transplant candidates get a pysch eval to ensure that they can comply with the aftercare regimen.

In this case, the parents would be in charge of the after-care regimen. Just like they're already in charge of her regular care regimen. She will require just as much care if the parents are taken out of the picture if she doesn't get the transplant as if she does. Allowing the transplant to be performed will not change this.

HIV is a contraindication to transplantation. These folks already don't have much of an immune system, and the anti rejection drugs will suppress what little they have left.

The mother is pretty forthcoming in the blog about her daughter's condition, and other than the WHS, she doesn't mention any other complications, such as either HIV or Hep C. Those are just other reasons on a form list of why people might be denied even the consideration for a transplant.

From the blog entry before the newest: After showing us a checklist of people who are not elgible [sic] for transplants, Mia falls under “Mental Retardation.”

She is being denied specifically due to mental retardation, which, as I mentioned, is outdated and inaccurate. All evidence points to the mentally retarded as just as viable recipients of kidney transplants as those with normal mental development. It's a case of the established tradition being so ingrained that it will take a public fight such as this to get it changed.

But really it is an issue of being able to comply with the aftercare requirements, which are considerable. Persons who don't have the mental capacity to do this are not considered good candidates in the face of many more who CAN comply. Organs are too few to waste on a patient who will kill the organ because they don't take their anti rejection medications, or engage in other behaviors like drinking or drugs that will kill the organ. Severe mental retardation does not make you a good candidate.

Again, the limit of available organs is moot: They would be taking one from a family member who would not be willing to donate to anyone else. I'm not sure how the mother would take it were no willing family members found to be a match, however. But as it stands now, supply is not a consideration.

Research article at OSU.edu

It basically states that the medical community has been discriminating against those with mental retardation because it was believed, as you posted, that those with MR would not be able to keep up with the after-care required, but all evidence points to those with MR having just as great a survival rate as those without. Plus, since in this case the child already has full-time caretakers, the fact that she is retarded is utterly irrelevant.

The mother could always go to another doctor. Makes me wonder why she hasn't. Or maybe she has and she's leaving that part out. We really don't know.

She'd have to go to an entirely different medical group. The doctor stated that CHOP would refuse to even consider performing the transplant, no matter whether they have a doctor that would be willing or not.

However, since both of the reasons given for the denial are about the child's mental capacity and how that would affect after-care, they have no legitimate reasons to refuse, only outdated traditions based on assumptions that, for all indications, are false.

^-.-^

[AdminAssistant]

Supply might not be a consideration, but space, resources, and time are. There are only a certain number of people who are able to perform what amounts to two operations, plus a lengthy recovery period, with a certain risk of failure built in. And, frankly, this sounds like the kind of person who would sue the pants of the doctor and hospital if anything with the transplant went wrong.

There isn't enough material here for me to fall on one side or the other. However, even if the kidney came from a family member, the hospital has to consider all the other resources that would be needed to perform a transplant.

[Andara Bledin]

But the hospital isn't considering any of that. They're not even considering considering it.

They've found a box on their list and checked it off and consider the matter closed. This is the crux of the problem.

^-.-^

[Ree]

Yes, as I see it, aside form the emotions and facts involved in this particular case, there is an even bigger issue that "mental retardation" in itself is listed as a reason to deny transplants.

There are different degrees of retardation.
Some are like this little girl, and there is severe mental delay along with numerous underlying health issues.
Some, though, have only the mental delays.

I know several mentally challenged people who work and live fairly independently, and are productive members of society.
If they were to suddenly develop a condition that required an organ transplant, the fact is, they can be denied that transplant simply because they are mentally retarded.

[HYHYBT]

A live donor means putting that person through the (not insubstantial) risks involved in having one removed.

A family member would be donating the kidney. It would not be "on the market" at all if the girl didn't need it, so it's not taking one away from anyone else.

Right. Hence the sentence you quoted, pointing out the risk to the donor of making the donation. That risk is one that will not be taken if the transplant is refused. Risking one life on a good chance to save another is one thing; but it seems to me it would be unethical to perform the removal if the transplant has very little chance of success.

Even normal adults are turned down if it is determined they can't comply with the regimen. Continuing addiction is the usual reason in the case of adults.

I know of someone who was refused a lung transplant over this. He'd quit *smoking.* But he couldn't give up the gum, and they counted any nicotine use as smoking, apparently not for any health reason but simply because it could be tested for. Or so I was told, anyway.

[Panacea]

I don't believe it's her normal surgeon, although it is a surgeon that's at the same hospital where the child is cared for. The mother actually has rejected a number of regular healthcare workers on grounds that they had no faith in the child's ability to survive or improve.

And she's not going to improve. She has a serious genetic disorder. She may live to adulthood, but the disorder isn't going away.

The child is already taking a variety of meds, including the anti-seizure meds that have successfully controlled her seizures.

Probably chloral hydrate or dilantin once or twice a day.

Rejection meds are a different regimen.

In this case, the parents would be in charge of the after-care regimen. Just like they're already in charge of her regular care regimen. She will require just as much care if the parents are taken out of the picture if she doesn't get the transplant as if she does. Allowing the transplant to be performed will not change this.

And when the parents die?

She is being denied specifically due to mental retardation, which, as I mentioned, is outdated and inaccurate.
Research article at OSU.edu

It basically states that the medical community has been discriminating against those with mental retardation because it was believed, as you posted, that those with MR would not be able to keep up with the after-care required, but all evidence points to those with MR having just as great a survival rate as those without. Plus, since in this case the child already has full-time caretakers, the fact that she is retarded is utterly irrelevant.

It's not discrimination if the physicians believe the medical evidence says different. You're talking about ONE study. That's not conclusive proof. It's interesting. It means more research should be done. But it does not mean transplant centers should simply rush to change their policies.

If more research is done to show that this first study is on target, then all well and good and I would support the mentally retarded having access to transplants.

Until that research is done, while I feel sorry for this family, I think the physician is making the right call.

But the hospital isn't considering any of that. They're not even considering considering it.

They've found a box on their list and checked it off and consider the matter closed. This is the crux of the problem.

They have to. Organs are too few and far between, and the operation itself is hideously expensive. Hospitals are not going to waste precious resources on patients who do not meet criteria for transplantation . . . and that would happen even if a family member's kidney were used.

I know of someone who was refused a lung transplant over this. He'd quit *smoking.* But he couldn't give up the gum, and they counted any nicotine use as smoking, apparently not for any health reason but simply because it could be tested for. Or so I was told, anyway.

That's because he was still addicted to nicotine, and therefore considered at a higher risk of relapsing back into smoking after the operation.

If he's nicotine free, then he has a stronger basis to claim he has beaten his addiction and is less likely to relapse.

[Gravekeeper]

We are beginning to make assumptions that are beyond the evidence we have. Need I remind everyone we have nothing except a blog post to go on here. We can't make assumptions about what the doctor ( speaking of which, what was the doctor's name? ) did or didn't do or what his reasons for doing it were based on the blog post of what is, honestly, going to be a severely biased source.

This is already spinning out into lunacy town in other blogs. But still is untouched by the media. So there is no investigation yet, no other side of the story and certainly no objective viewpoint on the situation so far.

There's just a blog post.

[Sleepwalker]

But the hospital isn't considering any of that. They're not even considering considering it.

They've found a box on their list and checked it off and consider the matter closed. This is the crux of the problem.

^-.-^

Whaaaaat. Flying off into assumption town. As much fun as it is to speculate based on a google search and the teary blog of a grieving mother, damning the hospital because of it is ludicrous.

Reminds me of watercooler talk about 'stupid' jury rulings when said cooler talkers only know what they've heard on the radio in passing.

[Ree]

We are beginning to make assumptions that are beyond the evidence we have. Need I remind everyone we have nothing except a blog post to go on here.
<snip>
There's just a blog post.

Not really.

For me, at least, this issue has become less about this particular child being denied a transplant based on her mental challenges, and more about the fact that mental retardation is listed as a reason for transplant denial, period.

Andara has supplied links to evidence that this is a fact, and Panacea, who works in the health care field, seems to back up that fact.

She is being denied specifically due to mental retardation, which, as I mentioned, is outdated and inaccurate.
Research article at OSU.edu

It basically states that the medical community has been discriminating against those with mental retardation because it was believed, as you posted, that those with MR would not be able to keep up with the after-care required, but all evidence points to those with MR having just as great a survival rate as those without. Plus, since in this case the child already has full-time caretakers, the fact that she is retarded is utterly irrelevant.

It's not discrimination if the physicians believe the medical evidence says different. You're talking about ONE study. That's not conclusive proof. It's interesting. It means more research should be done. But it does not mean transplant centers should simply rush to change their policies.

If more research is done to show that this first study is on target, then all well and good and I would support the mentally retarded having access to transplants.

Until that research is done, while I feel sorry for this family, I think the physician is making the right call.

But the hospital isn't considering any of that. They're not even considering considering it.

They've found a box on their list and checked it off and consider the matter closed. This is the crux of the problem.

They have to. Organs are too few and far between, and the operation itself is hideously expensive. Hospitals are not going to waste precious resources on patients who do not meet criteria for transplantation . . . and that would happen even if a family member's kidney were used.

So, yes, in the case of this child, we only have the mother's blog and all the emotion that goes along with it, but in the matter of the mentally challenged being denied transplants, no, we are not making assumptions.

[Ree]

Research article at OSU.edu

It basically states that the medical community has been discriminating against those with mental retardation because it was believed, as you posted, that those with MR would not be able to keep up with the after-care required, but all evidence points to those with MR having just as great a survival rate as those without.

You're talking about ONE study. That's not conclusive proof. It's interesting. It means more research should be done. But it does not mean transplant centers should simply rush to change their policies.

If more research is done to show that this first study is on target, then all well and good and I would support the mentally retarded having access to transplants.

Until that research is done, while I feel sorry for this family, I think the physician is making the right call.

I would think this is a bit of a catch 22.
More research needs to be done, but the fact that transplant organs are hard to come by, and there is a belief that transplanting into the mentally retarded is a potential waste of the organ, then how are more studies to be accomplished?

[Andara Bledin]

An NPR article from 2006 about another hospital denying someone with mental retardation a kidney transplant. And then, apparently lying about who made the determination that she wasn't eligible.

A pdf of an American Journal of Transplantation 2010; 10: 727–730
A region of Italy has declared that if a person doesn't test at least 50 for IQ, they don't even deserve consideration, and if they are between 50-70, then it ceases to be an automatic disqualification. The article looks at the ethics behind the less-obvious discrimination against those with mental retardation in the field of transplants.

^-.-^

[Gravekeeper]

For me, at least, this issue has become less about this particular child being denied a transplant based on her mental challenges, and more about the fact that mental retardation is listed as a reason for transplant denial, period.

And our only source for that information is still a blog post.

So, yes, in the case of this child, we only have the mother's blog and all the emotion that goes along with it, but in the matter of the mentally challenged being denied transplants, no, we are not making assumptions.

Which was not the matter I was referring too. I was specifically referring to the assumptions being made about the other side of this story. Which we do not have. By her own account, she did not listen to everything the doctor said, zeroed in on one thing, went off in a rage on the doctor and a social worker in a scene that sounds like a made for TV movie.

We have what she says the doctor said while she was obviously emotionally compromised. She feels the need to bring his race and skin colour into it on top of everything else. She says that the doctor mentioned having been "warned" about her. So obviously she's already done things to concern the medical staff or be difficult with them.

There must be something else here that she is not disclosing. Because she is free to rail against the hospital as much as she wants and create any story she wants because the hospital cannot breach doctor/patient confidentiality to defend themselves here. She can say anything she wants about them and what happened.

Even the doctor mentions at one point that the autoimmune drugs required after a transplant can cause serious seizures. This is correct, and people with a low seizure threshold can and have been classified as poor transplant candidates for just this reason. If a candidate has a history of seizures ( as this child does ) then yes it is brought up as a quality of life issue because the seizures could become more severe and possibly damaging if prolonged.

She may live, but she may also suffer more severe seizures that cause more neurological damage. I don't think this is simply a case of "She's mentally retarded, so she isn't worth it".

[Ree]

And our only source for that information is still a blog post.

Again, no.

It's a fact that mental retardation is listed as a reason for denial of a transplant.

Yes, the discussion started with the case of this little girl about whom we only have the information provided in the mother's blog.

A google search turns up numerous pages, and a majority of them are more blog posts with only the mother's original blog as reference.

As I said, in this case, we only have the mother's side for the reasons why the transplant is being denied, but for me, this goes way deeper than just this case.
For me, anyway, it's about the policy that allows denial of a transplant simply because the recipient is mentally challenged.

Yes, we could sit here all day debating this particular case and go back and forth on whether we really have enough information to pass judgment on the hospital for denying Amelia this kidney, but to me, that seems like a bit like banding one's head against the computer keyboard repeatedly, so I would like to constructively discuss the fact that "Mentally retarded" is even on the criteria for denial of a transplant.

This is a statement regarding Amelia's case released by the hospital on their Facebook page:

Children's Hospital of Philadelphia
We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings.

We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

CHOP’s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies.

In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion.

We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.

These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure.