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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Uh, huh, she will. AND SO WILL YOU, AND SO WILL I.

[Anonymous]

If it would be murder to kill her, than she deserves the same treatment as any human being.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Where are you seeing that she will die in six months to a year EVEN IF she gets a transplant? That was not my impression at all. She WILL die in six months to a year if she doesn't get a transplant.

I read other articles...

http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

"Dr. Kurt Hirschhorn, a pediatrician and geneticist at The Mount Sinai School of Medicine, and one of the two researchers who identified Wolf-Hirschhorn Syndrome in the early 1960s. He was also the head of the Mount Sinai Hospital Ethics Committee for 30 years (and, as it happens, he"s been a mentor to my husband at Sinai, and we consider he and his wife our friends.) Kurt read Chrissy's story and I asked him, "Should Amelia be put on the donor list for a kidney transplant?:

No, he said."

...

"he would want to make sure that a potential living donor fully understood the personal risks of such a donation, and also understood that Amelia's life would be prolonged, but not saved, by the transplant"

What's the difference between prolonging and saving her life? What if it prolongs it by 5 or 10 years? Does that make it worthwhile? We might reasonably look at lots of people who receive transplants as having their lives "prolonged" rather than saved. Just because this Hirschhorn doctor feels the same way as the docs at CHOP does not mean this belief is moral.

AND the parents were not so alarmed until they were told not just that she wouldn't be put on a list, but also that they couldn't have a family member donate her a kidney either. THIS IS WRONG. For fucks sake people. It's eugenics.

Eugenics: a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed

This has nothing to do with Eugenics. This has to do with allocation of scarce resources. It is not her right to have a kidney.

For people that have no idea why people receive kidney transplants; its intended to prolong life for a considerable amount of time 25+ years. This little girl unfortunately has a very severe form of the disease and isn't expected to live into adulthood.

Again, I understand that people think, based on what was reported by the family (CHOP can't release information due to privacy laws) that this is a travesty, but in reality the whole case was considered by a panel of doctors and laymen.

[Anonymous]

Anonymous wrote:If it would be murder to kill her, than she deserves the same treatment as any human being.

By that logic a raging alcoholic deserves a liver transplant just as much as a little girl in a car accident or a smoker a lung transplant over a ski-accident victim. But, the alcoholic and smoker are barred from receiving organs because they won't live long enough to receive a benefit from an organ transplant. This is how organ transplant works. Someone's loved one died tragically and their gifts, their organs should go to the people most likely to benefit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If it would be murder to kill her, than she deserves the same treatment as any human being.

By that logic a raging alcoholic deserves a liver transplant just as much as a little girl in a car accident or a smoker a lung transplant over a ski-accident victim. But, the alcoholic and smoker are barred from receiving organs because they won't live long enough to receive a benefit from an organ transplant. This is how organ transplant works. Someone's loved one died tragically and their gifts, their organs should go to the people most likely to benefit.

But HER OWN FAMILY want to give her a kidney. So this has nothing to do with someone's loved one dying and that dead child's kidney going to a god-forbid disabled kid. This little girl could live for years after receiving her kidney transplant. They cited her intellectual disability as the reason she was being denied her kidney transplant, not the amount of time she is expected to live.

What other life saving care should be withheld from this child because her life is not as valuable as other children's? Should she receive vaccines last? After all, those are resources that are finite, should she get to the back of the line because she's going to die young anyway? How about just any kind of medical care in general...what if she gets the flu and is in respiratory distress. Another healthier child comes in after her in the same condition. Should she get treated after the other kid so the "resources" aren't used up on her worthless life? See how this can become a philosophy of treating the mentally disabled as if their lives are less than? See how this becomes like eugenics?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If it would be murder to kill her, than she deserves the same treatment as any human being.

By that logic a raging alcoholic deserves a liver transplant just as much as a little girl in a car accident or a smoker a lung transplant over a ski-accident victim. But, the alcoholic and smoker are barred from receiving organs because they won't live long enough to receive a benefit from an organ transplant. This is how organ transplant works. Someone's loved one died tragically and their gifts, their organs should go to the people most likely to benefit.

But HER OWN FAMILY want to give her a kidney. So this has nothing to do with someone's loved one dying and that dead child's kidney going to a god-forbid disabled kid. This little girl could live for years after receiving her kidney transplant. They cited her intellectual disability as the reason she was being denied her kidney transplant, not the amount of time she is expected to live.

What other life saving care should be withheld from this child because her life is not as valuable as other children's? Should she receive vaccines last? After all, those are resources that are finite, should she get to the back of the line because she's going to die young anyway? How about just any kind of medical care in general...what if she gets the flu and is in respiratory distress. Another healthier child comes in after her in the same condition. Should she get treated after the other kid so the "resources" aren't used up on her worthless life? See how this can become a philosophy of treating the mentally disabled as if their lives are less than? See how this becomes like eugenics?

Again, eugenics has to do with mating. Not how you treat the disabled.

[Anonymous]

I would not be in favor of the transplant, if her prognosis is so grim

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Her condition is not fatal if she gets a transplant. You misinterpreted something.

No, its not a permanent fix. She will die organ or not.

Where are you seeing that she will die in six months to a year EVEN IF she gets a transplant? That was not my impression at all. She WILL die in six months to a year if she doesn't get a transplant.

I read other articles...

http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

"Dr. Kurt Hirschhorn, a pediatrician and geneticist at The Mount Sinai School of Medicine, and one of the two researchers who identified Wolf-Hirschhorn Syndrome in the early 1960s. He was also the head of the Mount Sinai Hospital Ethics Committee for 30 years (and, as it happens, he"s been a mentor to my husband at Sinai, and we consider he and his wife our friends.) Kurt read Chrissy's story and I asked him, "Should Amelia be put on the donor list for a kidney transplant?:

No, he said."

...

"he would want to make sure that a potential living donor fully understood the personal risks of such a donation, and also understood that Amelia's life would be prolonged, but not saved, by the transplant"

What's the difference between prolonging and saving her life? What if it prolongs it by 5 or 10 years? Does that make it worthwhile? We might reasonably look at lots of people who receive transplants as having their lives "prolonged" rather than saved. Just because this Hirschhorn doctor feels the same way as the docs at CHOP does not mean this belief is moral.

AND the parents were not so alarmed until they were told not just that she wouldn't be put on a list, but also that they couldn't have a family member donate her a kidney either. THIS IS WRONG. For fucks sake people. It's eugenics.

Eugenics: a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed

This has nothing to do with Eugenics. This has to do with allocation of scarce resources. It is not her right to have a kidney.

For people that have no idea why people receive kidney transplants; its intended to prolong life for a considerable amount of time 25+ years. This little girl unfortunately has a very severe form of the disease and isn't expected to live into adulthood.

Again, I understand that people think, based on what was reported by the family (CHOP can't release information due to privacy laws) that this is a travesty, but in reality the whole case was considered by a panel of doctors and laymen.

I'll just say it: you're thought process here is fucking evil. And here's a little more about eugenicists:

The "interventions" advocated and practiced by eugenicists involved prominently the identification and classification of individuals and their families, including the poor, mentally ill, blind, deaf, developmentally disabled, promiscuous women, homosexuals and entire racial groups -- such as the Roma and Jews -- as "degenerate" or "unfit"; the segregation or institutionalisation of such individuals and groups, their sterilization, euthanasia, and in the extreme case of Nazi Germany, their mass extermination.[16]

The doctors at CHOP have determined this girl is "unfit" to receive a transplant (from even her own family) because she is developmentally disabled and they are, in essence, recommending her extermination. They are refusing her life saving treatment with the full knowledge that it will kill her. And they are doing this because she is mentally retarded and is "unfit." It sounds very closely related to eugenics to me.

[Anonymous]

yes, she should be denied an unrelated transplant from the organ donation matching system. i am betting that the hospital "denying" her a familial live donation has much more to do with her as a surgical risk than anything else; i think she is probably a poor candidate to undergo the surgery/anesthesia/post-operative course with immunosuppressiive meds/etc and the parents are hung up on the part that she couldn't get on the national list, so are getting media attention for that.

[Anonymous]

what a heartbreaking situation for the family, and the doctors, too. I am sure they don't like to break hearts like this. Medical decisions like this happen, doctors have to consider length and quality of life and "greatest benefit" when making decisions about scarce resources. The problem is, it's hard to be anything but subjective when you discuss quality of life so they make arbitrary guidelines. It is my understanding, from only briefly reading these quotes, that the little girl will not live long. Coupled with her severe illness, the quality of life factor (and length of life extended factor) seems questionable. Doctors face similar dilemmas determining whether or not to give donated organs to the elderly. It's something that, as medical costs continue to go up, we will have to contend with more and more, I'm afraid. We need to bring health care costs DOWN and focus on preventive medicine for all so we don't have to pit lives against one another.

[Anonymous]

23:39 here. I am in no way agreeing, btw, that this little girl does not "deserve" an organ transplant. I am talking about the logistical reasons they make decisions like this. It's so sad.

[Anonymous]

Anonymous wrote:yes, she should be denied an unrelated transplant from the organ donation matching system. i am betting that the hospital "denying" her a familial live donation has much more to do with her as a surgical risk than anything else; i think she is probably a poor candidate to undergo the surgery/anesthesia/post-operative course with immunosuppressiive meds/etc and the parents are hung up on the part that she couldn't get on the national list, so are getting media attention for that.

I can't believe how many people are defending the hospital in this situation. It's scary! I suppose you think her mother is lying, but based on the explanation her mother says she was given she was not denied because she is a surgical risk (which lots of people getting transplants are, by the way, they don't tend to be healthy people in general hence needing a transplant) she was denied because she is mentally retarded.

And they have already said they want to find her a family donor. If in fact they did deny her because she has an intellectual disability and if there were a donor in her own family do you still think it is moral to deny her care?

[Anonymous]

Anonymous wrote:yes, she should be denied an unrelated transplant from the organ donation matching system. i am betting that the hospital "denying" her a familial live donation has much more to do with her as a surgical risk than anything else; i think she is probably a poor candidate to undergo the surgery/anesthesia/post-operative course with immunosuppressiive meds/etc and the parents are hung up on the part that she couldn't get on the national list, so are getting media attention for that.

ITA. To note: most of what is reported in the news regarding medical cases is one sided because hospitals can't set the record straight. I find what the family says to be hard to believe given what the current transplant guidelines say. They may be looking to benefit financially from all this publicity.

[Anonymous]

This is tough - I understand why docs wouldn't want to put her on the list (or possibly low priority on the list), but I don't see any reason to deny her a kidney from a willing donor from her own family.

That said, given that due to privacy laws, the hospital can't really discuss their decision making process in detail, I wonder if there's more to this story such as extreme surgical risk, high probability of long term extreme pain, high risk of rejection, etc. Don't get me wrong, I believe it is ethically wrong to deny a mentally disabled person an organ just because they have intellectual disabilities. But I also don't think it's always good to prolong life at all costs either, especially if this poor little girl won't understand what is happening to her, why she is in such pain, etc. Again, if that is short term pain or illness until recovery and her health measurably improves, then it is worth it. But if it just would make her life a little longer, and possibly more miserable, I don't know if it's worth it. And we don't know what the doctors were thinking - with more nuance, they could be both right and wrong.

All that said, I definitely support this little girl's mother in advocating so fiercely for her daughter. She seems like a wonderful, caring mom, and I am sure that if I were in her place, I would be doing the exact same thing. I would donate my kidney to my kid in an instant, as I'm sure we all would in her shoes.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If it would be murder to kill her, than she deserves the same treatment as any human being.

By that logic a raging alcoholic deserves a liver transplant just as much as a little girl in a car accident or a smoker a lung transplant over a ski-accident victim. But, the alcoholic and smoker are barred from receiving organs because they won't live long enough to receive a benefit from an organ transplant. This is how organ transplant works. Someone's loved one died tragically and their gifts, their organs should go to the people most likely to benefit.

But HER OWN FAMILY want to give her a kidney. So this has nothing to do with someone's loved one dying and that dead child's kidney going to a god-forbid disabled kid. This little girl could live for years after receiving her kidney transplant. They cited her intellectual disability as the reason she was being denied her kidney transplant, not the amount of time she is expected to live.

What other life saving care should be withheld from this child because her life is not as valuable as other children's? Should she receive vaccines last? After all, those are resources that are finite, should she get to the back of the line because she's going to die young anyway? How about just any kind of medical care in general...what if she gets the flu and is in respiratory distress. Another healthier child comes in after her in the same condition. Should she get treated after the other kid so the "resources" aren't used up on her worthless life? See how this can become a philosophy of treating the mentally disabled as if their lives are less than? See how this becomes like eugenics?

Again, eugenics has to do with mating. Not how you treat the disabled.

Ugh, seriously?

Some key components of eugenics are segregation or exclusion from the larger society, attempts to limit their propagation, and marginalization to the point of being thought of as "less than human."

population would always increase faster than the means of providing sustenance. Those who could not be fed would die and those most capable would survive. Therefore, charitable organizations that fed the poor and other indigent classes were detrimental to the course of societal progress.

Dr. Harry Haiselden, a Chicago surgeon and eugenicist. He persuaded parents of newborn disabled babies to refrain from treatment, including surgery that could have saved the child's life. Issues of treatment were brought to attention of the public through several newspaper articles.

The "T-4" program was initiated in Germany. Among the victims of this euthanasia program were individuals determined to be mentally defective. The rational is that they are a "burden."

Called the eugenics movement, it targeted for elimination a number of groups identified as “socially unfit,” including the “feebleminded,” “epileptics,” the “insane,” the “deformed,” and the “deaf.”