Should a child with an intellectual disability be denied an organ transplant?

[Anonymous]

Anonymous wrote:My DC had 2 surgeries at CHOP. Both times there was a patient with obvious mental disabilities on the post-surgical floor. To say that CHOP denied this girl surgery b/c of her mental ability is BS.

We ONLY have the mother's account. And she's got an agenda. CHOP can't discuss b/c of HIPPA. Do they actaully have a family donor ready to go or are they hoping to find one?

Also I don't see stories of other Children's Hospitals rushing to say that they'll do the surgery. There is a reason for that. The girl has a very genetic syndrome that can impact her ability to even survive the surgery itself let alone recovery etc.

There are 2 sides to every story.

What about the risk of liability to the hospital and doctors involved for taking on such a high risk surgery?!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Good question. I understand why we used to send young men to fight wars - they are the strongest, and fighting was all about strength. Nowadays though there are many other options. I know many people in their late 70s who would be very good for driving tanks, manning trenches etc. Perhaps it is time that we as a nation rethink our cannon fodder.

I don't know many 70 yos who can drive a Chevy very well, never mind a main battle tank. Our armed forces would either go too fast or too slow, and constantly have to stop for pee breaks. And they'd tailgate a lot.

You need quick reflexes and on top of that, um, there have been many accidents when the elderly seem to confuse the brake and the accelerator, resulting in serious injury and death to bystanders.

The point is not that they would be better soldiers, but that they would be more expendable.

Would there be some accidents as confused old people drove their tanks around?

Yes, there would.

Would these accidents involve an acceptable attrition rate?

Yes, they would.

War isn't always neat and pretty, it can be bloody and cruel. Far better to send those at the end of their lives into such a situation than the young, fit men and women that we need to produce the next generation of young people, who can, in time, become the next generation of ageing soldiers who can keep this great nation safe.

[Anonymous]

Anonymous wrote:

Good question. I understand why we used to send young men to fight wars - they are the strongest, and fighting was all about strength. Nowadays though there are many other options. I know many people in their late 70s who would be very good for driving tanks, manning trenches etc. Perhaps it is time that we as a nation rethink our cannon fodder.

You clearly know nothing about modern warfare or the military.

On the contrary, I know far too much about modern warfare to want to risk our young in such an endeavor. And I have seen way too many old people clogging up the nursing homes to think we couldn't risk a few of them in the field of battle. I for one would be proud to command such a battalion.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My DC had 2 surgeries at CHOP. Both times there was a patient with obvious mental disabilities on the post-surgical floor. To say that CHOP denied this girl surgery b/c of her mental ability is BS.

We ONLY have the mother's account. And she's got an agenda. CHOP can't discuss b/c of HIPPA. Do they actaully have a family donor ready to go or are they hoping to find one?

Also I don't see stories of other Children's Hospitals rushing to say that they'll do the surgery. There is a reason for that. The girl has a very genetic syndrome that can impact her ability to even survive the surgery itself let alone recovery etc.

There are 2 sides to every story.

What about the risk of liability to the hospital and doctors involved for taking on such a high risk surgery?!

If the liability risk is so high, it's because the risk of death is so high. I think you are arguing against your point.

[Anonymous]

I think the "mental retardation" is likely one of the reasons she was denied and it could be that the doctors who reviewed her info were just biased.

That being said, performing a living donor operation is not without risks to the person donating. The hospital may have assessed the family candidate and found them to be a poor risk. Should the hospital just do the surgery anyway? Does it have any responsibility to inform that patient that they could die?

[Anonymous]

Anonymous wrote:interesting. I have a friend whose son was born with severe mental retardation, in addition to a kidney disorder. My friend decided not to pursue a transplant for him, and he died around age 2. Her rationale was that she couldn't see denying an organ to a another person for the sake of her son, who would never walk or speak. I thought it very admirable of her to recognize that some people WILL contribute more to society than others (like her son) and to stand down in spite of her own grief.

As for whether the child should be allowed to receive a transplant from a living family member, I agree with PP that there must be other issues at play. Either the child is a poor surgery risk, or the family is being denied pro bono care.

I'm interested to hear from the family's defenders: How would YOU allocate a scare resource, such as donor organs? Strict first-come, first-served? Does that include drug users whose actions led to their illness? How about criminals in jail? Let's leave those two categories out: only "blameless" candidates allowed. There still aren't enough organs. What's the next criteria? I guarantee you someone will take issue with any method you devise, but I am ok with letting nature take its course in the case of this child who has probably already lived longer than she would have without the care she's already received.

I agree. Given the prognosis of the disorder this child has and the scarcity of resources, it's better to deny her a non-familial transplant. If a transplant from a family donor is also of such high risk, the doctors are also making a prudent decision not to do the surgery.

I'm so sorry your friend had to go through what she did.

[Anonymous]

A few clarifications:
1. At most centers there is no upper age limit for kidney transplant recipients, however certainly as you approach 80+, any life years gained do not exceed what you might be expected to live anyway.
2. You cannot "slice" up a kidney to make it smaller for a child. You CAN do that with a liver. The protocol at Stanford is somewhat experimental and specific to that hospital. Most hospitals will not be able to put a full size adult kidney into a very small child.
3. Mental competence is used in every single selection of organ recipients. Every potential candidate is seen by a social worker, financial counselor, and possibly a psychiatrist. If a patient (directed more towards adults here) is unable to understand and reliably take their medications and come in for follow-up tests and appts, then they may be denied a transplant.
4. People with end-stage diseases are turned down for transplant all the time. A person with cancer would never be given an organ until a sufficient time after remission is achieved. Organs are too scarce to put into someone who will not get maximum gain from it. Even if a living donor came forward for one of these patients, the hospital would not go forward.
5. Other conditions such as seizures and brain injuries can make it much, much harder to take immunosuppressive medications after transplant.
6. And finally... unfortunately all transplant centers are monitored constantly and results put into a system called the SRTR. It is public knowledge - you can look up the graft and patient survivals for every center. While this may seem good at first because it assures you of the quality of a center, it makes it impossible for centers to accept too many high risk patients. It is incredibly easy to fall below the statistical norm. If that happens, your center goes on probation or is closed down. Therefore, although doctors may want to do any patient that walks through the doors, it is absolutely impossible for them to accept cases with small chances of long term success.

I'm actually really unsure of how I feel about this specific case, but there were too many inaccurate statements here for me not to comment!

[Anonymous]

Anonymous wrote:On the mother's account the doctor said she was denied for mental retardation and no other reason. The chances the doctor said that, even if that was his motive, are zero. The child has many health issues that make transplantation less likely to be successful than some other cases. Given that the mother's account is not believable, I'm not sure what we are debating.

Privacy laws restrict the doctor's ability to defend himself. The one thing we do know is that we know all of the facts. I did read that the child is on some very strong medications related to her other conditions that she would not be allowed to take post-transplant, as it might interfere with the anti-rejection medication. I would assume that her prognosis is related to her inability to continue to keep those other conditions under control with medications.

[Anonymous]

Anonymous wrote:

Anonymous wrote:On the mother's account the doctor said she was denied for mental retardation and no other reason. The chances the doctor said that, even if that was his motive, are zero. The child has many health issues that make transplantation less likely to be successful than some other cases. Given that the mother's account is not believable, I'm not sure what we are debating.

Privacy laws restrict the doctor's ability to defend himself. The one thing we do know is that we know all of the facts. I did read that the child is on some very strong medications related to her other conditions that she would not be allowed to take post-transplant, as it might interfere with the anti-rejection medication. I would assume that her prognosis is related to her inability to continue to keep those other conditions under control with medications.

Sorry -- I meant "don't know all the facts."

[Anonymous]

I think the answer to the question regarding intellectual disability is no, unless the patient is so disabled that they are completely unable to get any enjoyment out of their lives, no, intellectual disability should not be the basis for denying an organ transplant.
I am assuming that, given that this child's eligibility is undoubtedly being reviewed by multiple doctors and CHOP officials at this point in light of the publicity surrounding the issue, and CHOP's decision is still not to do the transplant, there is likely more going on here than the child's intellectual disability. However, putting myself in the parents' position, I think it would be impossible for me to accept that nothing more could or should be done for my child.

[Anonymous]

Anonymous wrote:
6. And finally... unfortunately all transplant centers are monitored constantly and results put into a system called the SRTR. It is public knowledge - you can look up the graft and patient survivals for every center. While this may seem good at first because it assures you of the quality of a center, it makes it impossible for centers to accept too many high risk patients. It is incredibly easy to fall below the statistical norm. If that happens, your center goes on probation or is closed down. Therefore, although doctors may want to do any patient that walks through the doors, it is absolutely impossible for them to accept cases with small chances of long term success.

This last point makes the most sense to me. My spouse is actually about to be listed (I hope) for a kideny transplant in the near future, and I have heard that the process is very rigorous, even if you think you might have a donor lined up. I didn't understand why the center would make you go through the whole evaluation process in that case. I mean, I can understand being picky with organs from cadavers because of the limited supply. But if you had someone donating just to you, why should the transplant center care how you fared? But in light of what you posted it all sadly makes more sense.

[Anonymous]

Thank you 22:36. Very informative.

[Anonymous]

How about it
Lets take the intellectually disabled American kids and sent to Africa to pick the cocoa beans for the chocolate companies, and then replace our mentally disabled with able-minded African children who already are working at the fields

[Anonymous]

Putting aside the specific facts of this case, it troubles me to see so many PPs saying it is flatly impossible for doctors to have a bias against intellectual disabilities. This is a demonstrated, entrenched, documented trend among physicians of all specialities. Surveys about withholding treatment from mentally disabled children consistently show a majority of doctors in favor. This bias is prevalent and hard to overcome.

It begins with genetic screening. When negative screening results come back, the presumption is that the parents will terminate. When I was reading reviews of high-risk OBs in this area, I came across countless stories of women who were coarsely told "you will have to terminate" by doctors who refused to discuss options. When people saw my disabled brother at the playground, the first question my mom would be asked was, "You didn't test for that?". When my parents declined termination, they were put under immense pressure by the medical establishment. It's not just my anecdotes, though--again, researchers have uncovered the trend for decades.

So the assumption that doctors are incapable of this kind of bias is false.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Good question. I understand why we used to send young men to fight wars - they are the strongest, and fighting was all about strength. Nowadays though there are many other options. I know many people in their late 70s who would be very good for driving tanks, manning trenches etc. Perhaps it is time that we as a nation rethink our cannon fodder.

I don't know many 70 yos who can drive a Chevy very well, never mind a main battle tank. Our armed forces would either go too fast or too slow, and constantly have to stop for pee breaks. And they'd tailgate a lot.

You need quick reflexes and on top of that, um, there have been many accidents when the elderly seem to confuse the brake and the accelerator, resulting in serious injury and death to bystanders.

The point is not that they would be better soldiers, but that they would be more expendable.

Would there be some accidents as confused old people drove their tanks around?

Yes, there would.

Would these accidents involve an acceptable attrition rate?

Yes, they would.

War isn't always neat and pretty, it can be bloody and cruel. Far better to send those at the end of their lives into such a situation than the young, fit men and women that we need to produce the next generation of young people, who can, in time, become the next generation of ageing soldiers who can keep this great nation safe.

Please tell me any war that has been neat and pretty. All wars are bloody and cruel. Young people are sent to war because they are fearless and we lose this fearlessness as we age and when we send the 50, 60, 70 year olds to fight against the 18-3o age soldiers of another country the war would be over in a single day and then this great nation would no longer be safe. Your idea of how to keep this nation safe in laughable.