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

Anonymous
Anonymous wrote:Eugenics is bad. We all get that.

How do you put this girl on the list, knowing another child is probably going to die as a result? If she lives to adulthood it will be a miracle.


What about using a living, willing donor, though?

This reminds me a bit of the Philip Becker case. He was a 10 year old boy with Down syndrome. He needed a corrective surgery. His biological parents, who had given him up to foster care when he was an infant, stepped in and refused to permit the surgery, arguing that they preferred he die young (a slow, painful death) than grow up with a mental handicap. The courts backed the biological parents' decision over the foster parents, and the surgery was not done. It took four years of court battles by the foster parents before he received the surgery.

In that case, the biological parents' bias against intellectual disability denied intervention. Here, the doctors' bias against intellectual disabilities is denying intervention. When a survey of physicians was done by researchers after a series of high-profile cases in the 1970s, 70% of doctors agreed with the idea of withholding treatment, including food and water, from mentally disabled children. That bias is insidious, and no, not everyone gets that eugenics is bad. In fact, eugenics is the legally accepted, reasonable exception for post-viability abortions--it's written into dozens of statutes, here and abroad. Here's Britain's law:

An abortion is legal after 24 weeks:
--if it is necessary to save the woman's life
--to prevent grave permanent injury to the physical or mental health of the pregnant woman
--if there is substantial risk that if the child were born, it would suffer from physical or mental abnormalities as to be seriously handicapped.

How many times have DCUMers approvingly supported one another through "late termination for likelihood of intellectual/physical disabilities"? And that mentality of lessened quality of life magically stops at birth?
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Yes


Whatever asshole.


Why is someone an "asshole" for thinking the mother's account is not entirely accurate. Did you not read how she described her own mental state during this meeting?

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

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?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.


If we want to have a debate on organ transplant criteria, I think that's healthy. If this is just an exercise in picking sides based on who we like, I think it is a worthless activity.

If there is anyone to be mad at, it is the public at large. The reason that transplant committees have to make these choices is because you and I haven't checked our organ donor options on our driver's licenses. This is a great day to take a look at yours and if you haven't gotten around to it, take your passion and get this corrected. Or sign up for a registry like this one: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx There is a 0.2% chance that you will save a person's life. That's pretty cool.

FWIW I feel that a Down Syndrome patient, who has a shorter but reasonable life expectancy, should be a candidate. But I think it is very difficult to pass over another patient to give an organ to a girl who has very low odds of seeing her 21st birthday. Because for every child like this and every upset mother, there is another child and mother in another hospital filling out the same paperwork. They share the same fears, the same pain, the same hopes and dreams for their future. And only one of them is going to get that matched kidney.



Oh, how incredibly benevolent and generous of you that you think someone with Down Syndrome should be allowed a transplant despite their "shorter" life expectancy. That it is even a question, or that you should even mention you think a person with Down Syndrome should be a candidate illustrates the problem. What the fuck it goes without saying a person with Down Syndrome should not be denied just because they have an intellectual disability! What we are talking about here is denying someone life saving treatment because they have a developmental disability, not because their health is too medically fragile to have the surgery. Maybe that did factor or even make the decision in the case of this little girl. IF this little girl was denied, and if anyone is denied SIMPLY because they have cognitive delays or are "mentally retarded" that is WRONG and it is EVIL to think otherwise. Sorry, if you're an organ donor you don't get to chose who gets your organs. Likewise if you go on the list, you don't get to decide that the person ahead of you isn't as worthy, especially not because they aren't as "smart" as you think people should be to deserve life. And yes, if a drug addict, or prisoner, or anyone needs a kidney transplant and has a living relative willing to donate to them, I don't see how I'm a part of that decision at all. For all the 50 something year old obese people getting heart surgery, and on dialysis, and having back surgery etc, etc, yes these needy people should be allocated the "resources" to have their insurance pay for a transplant.

God the world is full of evil minded people. Don't forget, if you're willing to play this fast and loose with the worthless lives of the disabled...well, eventually someone may find your life worthless too and deny you needed medical care.
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Yes


Whatever asshole.


Why is someone an "asshole" for thinking the mother's account is not entirely accurate. Did you not read how she described her own mental state during this meeting?

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

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?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.


If we want to have a debate on organ transplant criteria, I think that's healthy. If this is just an exercise in picking sides based on who we like, I think it is a worthless activity.

If there is anyone to be mad at, it is the public at large. The reason that transplant committees have to make these choices is because you and I haven't checked our organ donor options on our driver's licenses. This is a great day to take a look at yours and if you haven't gotten around to it, take your passion and get this corrected. Or sign up for a registry like this one: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx There is a 0.2% chance that you will save a person's life. That's pretty cool.

FWIW I feel that a Down Syndrome patient, who has a shorter but reasonable life expectancy, should be a candidate. But I think it is very difficult to pass over another patient to give an organ to a girl who has very low odds of seeing her 21st birthday. Because for every child like this and every upset mother, there is another child and mother in another hospital filling out the same paperwork. They share the same fears, the same pain, the same hopes and dreams for their future. And only one of them is going to get that matched kidney.



Oh, how incredibly benevolent and generous of you that you think someone with Down Syndrome should be allowed a transplant despite their "shorter" life expectancy. That it is even a question, or that you should even mention you think a person with Down Syndrome should be a candidate illustrates the problem. What the fuck it goes without saying a person with Down Syndrome should not be denied just because they have an intellectual disability! What we are talking about here is denying someone life saving treatment because they have a developmental disability, not because their health is too medically fragile to have the surgery. Maybe that did factor or even make the decision in the case of this little girl. IF this little girl was denied, and if anyone is denied SIMPLY because they have cognitive delays or are "mentally retarded" that is WRONG and it is EVIL to think otherwise. Sorry, if you're an organ donor you don't get to chose who gets your organs. Likewise if you go on the list, you don't get to decide that the person ahead of you isn't as worthy, especially not because they aren't as "smart" as you think people should be to deserve life. And yes, if a drug addict, or prisoner, or anyone needs a kidney transplant and has a living relative willing to donate to them, I don't see how I'm a part of that decision at all. For all the 50 something year old obese people getting heart surgery, and on dialysis, and having back surgery etc, etc, yes these needy people should be allocated the "resources" to have their insurance pay for a transplant.

God the world is full of evil minded people. Don't forget, if you're willing to play this fast and loose with the worthless lives of the disabled...well, eventually someone may find your life worthless too and deny you needed medical care.


You are so full of venom that you are not even reading what I wrote. I brought up Down Syndrome to demonstrate that I think it is wrong to deny a candidate based on diminished intellectual capacity. I am on your side on this part of the discussion and yet you tear me down for it.

OTOH I had a father with renal failure, and I can understand that he was not going to get a kidney because his life expectancy, even with the transplant, was short. He had other medical conditions. Had he received a transplant, he would have lived maybe five years max. It is the same case with this girl. She has Wolf-Hirschhorn. Very few of them live. On top of that her kidneys are failing.

We have to face the fact that life expectancy post-transplant is a valid criterion for a transplant committee. The mother did not mention anything about the life expectancy of Wolf-Hirschhorn patients. Ask yourself why.
Anonymous
Those over a 70, I believe, cannot be put on transplant list. Maybe one of them is a scientist and on the brink of making a discovery of earth shattering importance. If there is someone who want to be a donor specifically for that person, they can. Ergo, if age discrimination is acceptable then intelligence and quality of life should also be a factor in determining who gets the transplant.
Anonymous
Anonymous wrote:Those over a 70, I believe, cannot be put on transplant list. Maybe one of them is a scientist and on the brink of making a discovery of earth shattering importance. If there is someone who want to be a donor specifically for that person, they can. Ergo, if age discrimination is acceptable then intelligence and quality of life should also be a factor in determining who gets the transplant.


Actually AMA rules prohibit giving organs to people because of their special contribution to society. What you are making is a "social worth" argument, that one person should get an organ because they are worth more than another person to society. This is unethical and disallowed.
Anonymous
The question isn't whether she should be "denied" a transplant, the question is whether the hospital should use the funds to help another person in medical need instead. If a charity raises the money for the procedure, and the family supplies a live donor, the hospital will go ahead with it.
Anonymous
the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.
Anonymous
Anonymous wrote:the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.


Actually, the ADA prohibits utilitarian discrimination, and while the force of law may not come into play in this little girl's situation, as a society, we do not off people who are not "productive"--at least, not after birth...
Anonymous
Anonymous wrote:the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.


Of the above group, who should be drafted? Same answer, right?
Anonymous
Anonymous wrote:
Anonymous wrote:the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.


Of the above group, who should be drafted? Same answer, right?


Sometimes, you can't predict war, but you CAN estimate life expectancy, barring war, accidents, suicide, etc.
Anonymous
Anonymous wrote:
Anonymous wrote:the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.


Actually, the ADA prohibits utilitarian discrimination, and while the force of law may not come into play in this little girl's situation, as a society, we do not off people who are not "productive"--at least, not after birth...


Or you can think about others who would benefit from the organ for a longer stretch of time, like the mother who another PP noted declined to have her severely retarded 2 yo on the organ list. The child would not have been able to walk/talk with or without the organ, so the mother showed her selflessness in order that another child could receive the organ.
Anonymous
Anonymous wrote:
Anonymous wrote:the PP above reminded me of an ethics course offered at the VA hospital that my co-worker attended. There are limited medicines, organs, resources. There are patients listed below:
1. 80 year old poet
2. 20 yo young man
3. pregnant woman

Who should get the limited resource?

The 20 yo young man should get it. He is the strongest to survive and has a productive life ahead of him. The 80 yo and the pregnant lady are too vulnerable and have the highest risk of dying post surgery.

it should go to the one who will be the most likely to survive and be a productive member in society. Barring accidents, the 20 yo has 60 years ahead of him.


Of the above group, who should be drafted? Same answer, right?


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.
Anonymous
You all do realize that using a living donor means using a child donor, right?

You cannot put an adult kidney into a 3 year old child. That is not ethical in my opinion. An adult consenting to give a child's kidney away. That's why they did not allow a live donation.

The doctors said that the best option given her condition is dialysis. She might not survive the surgery (heart condition) or having to be on immunosuppresants (can't fight disease).
Anonymous
Anonymous wrote:You all do realize that using a living donor means using a child donor, right?

You cannot put an adult kidney into a 3 year old child. That is not ethical in my opinion. An adult consenting to give a child's kidney away. That's why they did not allow a live donation.

The doctors said that the best option given her condition is dialysis. She might not survive the surgery (heart condition) or having to be on immunosuppresants (can't fight disease).


Not true!

Children even as young as Amelia can receive adult organs -- these body parts can be sliced in a way to fit inside a child's body.
Anonymous
Because many individuals with disabilities have a guardian or health care provider making sure they're getting to their appointments, the compliance is not an issue," said Marilee Martens, program director of Nisonger Center at The Ohio State University.

Martens wrote a 2006 report examining the outcome of patients with developmental delays who received kidney transplants. The report published in Pediatric Transplantation concluded that the one-year patient survival rate was 100% and the three-year outcome was 90%.

The child can get a kidney donated from an ADULT in her own family.

They have health insurance.

If she is not too medically fragile her intellectual disability should not keep her from getting a kidney from a willing adult donor in her own family.
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