C
CDB1718
Guest
It’s a family donation. They aren’t asking to be put on the donor list.
Hospital denies life saving transplant to child because of special needs
- Status
E
EmperorNapoleon
Guest
The mother’s offer rings hollow until she can produce a compatible donor willing to undergo the surgery. The doctor is still well within his rights to refuse to perform the transplant if, in his judgement, it would not be successful or would cause greater harm than good to the patient in the long term.
H
Hokomai
Guest
The grounds on which most people are denied major life-saving surgery are financial. If you have enough money, you can find a surgeon to do the work. where you depend on others - through tax, or the mutual benefit of insurance, there are always criteria and priorities set. If you are born in a very poor village in Niger or Chad, and need a life-saving operation, you will almost certainly die. Western governments could accept children from the third world and do allthese operations, or fund them in their home countries. The expense would, of course, hugely lower living standards as western taxes went up. any of us in the west with a good living standard could arrange to pay for life-saving operations for other people. generally, we don’t. We keep money aside for our own, and prioritise them. The issue almost never comes down to an individual doctor. It comes down to setting priorities - and it is reasonable to include a concept of ‘quality of life’ among priorities. There should be open discussion and debate on this, so that the quite reasonable view that (say) people with Downs syndrome have a generally good quality of life can be considered
T
Trader
Guest
This is one of the many problems I have with this story. They don’t have a donor until a lot of tests are done and that can take months. They don’t start testing for a compatible donor until after the recipient is approved for a transplant.
To simplify this as much as possible, there are two main limits to being medically approved for a transplant:
1)You have to be sick enough to need a transplant, and
2) You have to be healthy enough to survive the operation and the immune system suppression necessary to prevent the rejection of the new organ.
These limits are absolutely necessary and in this country they trigger even more rejections than the lack of money to pay for the surgery. A lot of people come to the hospital already too sick to benefit from a transplant. It is very possible that the girl in this story falls into this category.
I know the process to be approved as a living donor because I went through it with my sister. It starts with a medical history questionaire. Some of it is obvious. You have to be in excellent health. If you have a personal history of heart disease, cancer, or stroke, you cannot be a living donor. If you have high blood pressure or diabetes, you cannot be a donor. If you have ever had kidney disease, including kidney stones, you cannot be a donor. If you have had any serious viral disease like HIV or hepatitis you cannot be a donor. If you are a smoker, you are urged to stop for at least several months before the surgery. If you have a history of substance abuse, you will probably be rejected.
If your medical history is satisfactory, you have your blood pressure tested and get a simple ABO blood typing. If the blood type is compatible and the blood pressure is normal you move on to another round of testing. This involves four vials of blood that totals almost as much as blood donation. It was enough that I was dizzy when I got up. I had to sit in the hospital lounge with orange juice and some crackers for about 20 minutes before I could drive myself home. I never saw the bill for the testing, but I bet I could have had a full meal at a first class restaurant for what the hospital charged for that OJ
. One of these blood tests involves mixing the blood of the prospective donor and the prospective recipient and waiting to see if antibodies develop over a few days. This test cannot be done with cadaver kidneys and is one of the reasons why a match from a living donor has a better success rate than a match from a deceased donor. It was this test that determined I could not donate a kidney to my sister. If I had died in an auto accident, they would have used my kidney and it would have been rejected. The reaction to my DNA was probably caused from a previous blood donation my sister received 15 years before for a totally different problem. In 1991 there was no really accurate test for HIV and donations from known blood donors were considered important.If you pass all the blood tests you get a comprehensive physical exam and CRT scan to see if your kidneys are normal and in the right place. Only if no problems are discovered in this phase are you ready to be a donor. If either donor or recipient have a cold or minor infection, the operation will be delayed until those are treated.
Having a large family is not as big an advantage as some think. My sister had four brothers and two children. The children had their father’s blood type and could not be considered. All four brothers had the same blood type, but I was the only one healthy enough to pass the questionaire phase. It is common that the reason someone needs a kidney transplant in the first place runs in families, whether it is genetic or envrionmental.
C
CDB1718
Guest
Trader, I understand what you’re saying.
If there was any concern about Amelia’s ability to be a donor recipient, the conversation would have focused on that. The doctor and social worker wouldn’t need to belabor the point of who would give her medicine when she’s 30 if she can’t physically tolerate the surgery.
The difficulty in finding a donor will be a step the family will have to go through and discussing the difficulty with them is appropriate. Refusing to let them try is a different matter.
If there was any concern about Amelia’s ability to be a donor recipient, the conversation would have focused on that. The doctor and social worker wouldn’t need to belabor the point of who would give her medicine when she’s 30 if she can’t physically tolerate the surgery.
The difficulty in finding a donor will be a step the family will have to go through and discussing the difficulty with them is appropriate. Refusing to let them try is a different matter.
E
EmperorNapoleon
Guest
That is a concern about her eligibility to be a donor recipient. Organ transplants require a lifetime of maintenance and monitoring so the ability and willingness of patients to take the required medications, report problems, and see her doctor(s) regularly is not optional. Amelia’s condition renders her unable to do those things on her own and no one can force her to once she reaches adulthood.
T
Trader
Guest
Compliance is another huge obstacle that does need to be addressed. People are denied listing for a transplant every day because their ability to comply with a strict regimen is doubtful. The common reason is that the person has destroyed his organ or organs from substance abuse. It is not a moral judgement that a substance abuser is unworthy of a transplant. It is a medical judgement based on tons of evidence that a current or recent substance abuser is not capable of following the rules necessary to survive.
I can’t stess enough how complicated the medical issues are. Before the transplant my sister was on an extremely limited diet and seven different prescriptions. Even her water intake was limited. She had a cardiologist, a nephrologist, an internist to referee what they did and primary care physician to oversee scheduling and administer the drugs that were IV’s. After the surgery the diet returned to normal, but she got seven new prescriptions. These drugs have side effects and dosages need to be adjusted. One of the common side effects of immune system suppression is diabetes, which my sister did develop after surgery. It is hard enough to monitor all this, but if the patient is unable to communicate her symptoms, the problems are multiplied. The simple fact that this child is only three years old guarantees that dosages will have to be adjusted as she grows larger.
C
CDB1718
Guest
The professional transplant doctors refute these claims. I posted it in the second post. They say compliance is not an issue with intellectual disability and should not disqualify. If she is incapable of doing it, then she needs to have a support system in place who can do it for her. This is how any child is treated. Her family is responsible for her care as a minor and her family is complying with her strict medical regime. There’s no reason to believe they won’t comply in the future.
The transplant is expected to last 12 years. She’ll be a minor for the entire time being discussed. The only reasonable request I can think of to ensure protection is a will providing for her care if her parents unexpectedly die, just like any other child or dependent would need.
The transplant is expected to last 12 years. She’ll be a minor for the entire time being discussed. The only reasonable request I can think of to ensure protection is a will providing for her care if her parents unexpectedly die, just like any other child or dependent would need.
T
Trader
Guest
I can also speculate about another problem no one has mentioned. This girl is only three years old and with her other serious health problems, it is likely she is small for her age.
The only kind of kidney she can get from a living donor is an adult kidney, which is about the size of a fist. Not only is the physical size a problem, but the size of blood vessels and tubes that need to be attached are of different sizes. This is a serious problem for a surgeon. It means the surgery takes longer and the risk of complications increases. Our family friend is a pediatric urological surgeon, and the difficulty of operating with tiny little blood vessels is the reason his specialty exists in the first place.
The only kind of kidney she can get from a living donor is an adult kidney, which is about the size of a fist. Not only is the physical size a problem, but the size of blood vessels and tubes that need to be attached are of different sizes. This is a serious problem for a surgeon. It means the surgery takes longer and the risk of complications increases. Our family friend is a pediatric urological surgeon, and the difficulty of operating with tiny little blood vessels is the reason his specialty exists in the first place.
S
SamTheNewfie
Guest
It’s easy to judge people on a transplant committee for discriminating against the intellectually disabled, but it’s also easy to forget that they see what others don’t. They see the other people waiting on the list. Organs are not of limitless supply. Someone will most likely die no matter what choice they make. You can’t expect them to save someone who will not have the greatest chance of living the best quality of life in the name of not being disciminatory when it’s at the expense of someone else’s life.
T
Trader
Guest
Sorry, but you are contradicting you own post:
- Reduced or absent cognitive skill to comply with complex posttransplant, antirejection medication regimens. This is true, but compliance is increased by family and social support, as reported in the above-mentioned studies. Moreover, according to this argument children without MR should not be eligible to solid-organ transplantation. In addition, with regard to renal transplantation, how is it possible to assume that an end-stage renal disease patient, who is compliant to hemodialysis, will not be compliant to renal transplantation procedures?
S
SamH
Guest
Keep moving the goal posts.
S
SamH
Guest
So what you are saying is that NO CHILDREN should be eligible for transplants?
T
Trader
Guest
Absolutey not! I am saying that one of the factors that has to be considered is the abliity of the parents to ensure compliance. It is an unfortunate fact that a lot of kids have ****** parents. A lot of loving parents do not have the personal resources to manage a problem of this magnitude. Sometimes the parents have physical problems of their own. Sometimes the problems are financial. There is a joke at the initial meeting for potential recipients that if you don’t have insurance, your cause of death will be listed as “lack of insurance”. Just to be clear, that joke is not told by the medical staff, but they have heard it many times from patients.
Even as transplants have become more common, they are still considered extraordinary care by any definition I can think of. No hospital is morally required to provide extraordinary care to all comers without compensation.
There is another factor I left off on my previous post. I can only say this here because the forum is anonymous. You can choose to believe it or not. One of the factors I had to consider in my required personal counselling was whether my sister would comply. The doctors had only known her for a few months, but I had known her for her entire life. It was my best judgement that she would. This was not just a feeling. It was also based on how well she had stuck to an extremely restrictive diet. She had been able to lose a lot of weight and reduce her blood pressure. The BP was still high because her kidneys were only functioning at 11%, but it had dropped to more benign levels. I also have a brother who has shown much less personal responsibility. He eats too much, drinks too much, and has also developed health problems because of his behavior. If I had been asked to donate my kidney for him I would have said “no” based on an informed opinion that he would not be able to comply. It would be morally wrong to put myself and my brother at risk from a procedure that I believed would not produce a proportional benefit.
I also would not have chosen to donate a kidney to a stranger, partly based on my lack of certainty about compliance. There are plenty of other personal reasons, but you will have to guess what they are. I will not be discussing them here.
Even as transplants have become more common, they are still considered extraordinary care by any definition I can think of. No hospital is morally required to provide extraordinary care to all comers without compensation.
There is another factor I left off on my previous post. I can only say this here because the forum is anonymous. You can choose to believe it or not. One of the factors I had to consider in my required personal counselling was whether my sister would comply. The doctors had only known her for a few months, but I had known her for her entire life. It was my best judgement that she would. This was not just a feeling. It was also based on how well she had stuck to an extremely restrictive diet. She had been able to lose a lot of weight and reduce her blood pressure. The BP was still high because her kidneys were only functioning at 11%, but it had dropped to more benign levels. I also have a brother who has shown much less personal responsibility. He eats too much, drinks too much, and has also developed health problems because of his behavior. If I had been asked to donate my kidney for him I would have said “no” based on an informed opinion that he would not be able to comply. It would be morally wrong to put myself and my brother at risk from a procedure that I believed would not produce a proportional benefit.
I also would not have chosen to donate a kidney to a stranger, partly based on my lack of certainty about compliance. There are plenty of other personal reasons, but you will have to guess what they are. I will not be discussing them here.
C
CDB1718
Guest
None of this has anything to do with the facts reported by the mother in Amelia’s case.
M
maryjk
Guest
But we don’t know that what she has reported are facts.
And the hospital isn’t allowed to say what is truly happening
C
CDB1718
Guest
I have no problem with that position. If you are skeptical from only hearing one side of the story, even with others giving supporting evidence that it is common and plausible, then there’s no problem in withholding speculation and judgment.But we don’t know that what she has reported are facts.
T
Trader
Guest
Let me be perfectly clear. ** I don’t believe all the facts as reported in this case.** One of the many reasons not already addressed is the inflammatory rhetoric about a life saving transplant. I understand that forum rules required you to use the same headline as the news article. I also understand that the headline is not just there to attract attention as headlines frequently are. It is in the story also.
Heart and liver transplants really do fit the definition of life saving procedures. Kidney transplants usually do not meet that definition to the same degree. They are still important because they relieve suffering and allow recipients to lead a more normal life than dialysis and treating the anemia and risk of infection that is not handled by dialysis alone. When transplants are given to properly qualified recipients, they are life extending.
Everyone agrees that there is a single source for the facts on this case. All else is speculation, including anything I have said here that was not from my personal experience with a real transplant case. We do not have the hospital’s side of the story and we are not going to get it because of privacy concerns that are a necessary part of health care.
I have heard the accusations of people who thought the transplant procedures were unfair before. People who are suffering serious illness in the family and can’t get what they need from the system are always upset, but they are not necessarily credible sources on the facts. At Northwestern Memorial the majority of people looking for a kidney transplant are minorities. There was plenty of grumbling when my sister, a white woman, got a kidney in 18 months when the average wait nationally is five years. This is a real problem in a system where the average dialysis patient survives three years, although some last much longer. The factors that go into the transplant guidelines are public, but the exact details of their relative weighting are not. The medical facts go into a computer and the system decides who gets an organ and who does not. There is plenty of material here for conspiracy theories, especially when the facts are in dispute. It is entirely possible for two doctors to have different opinions on the facts of a particular case.
While I was undergoing testing and praying really hard for my sister, I met a fellow parishoner whose brother was also at Northwestern. He was in really bad shape. He had serious diabetes and heart trouble. He had already lost both legs and was judged too sick to get a transplant. His sister was convinced this was unfair and due to the fact that they were Hispanic. She also thought it was unfair that diabetes ran in her family, but both the sister and her mother were morbidly obese-in the 300 lb range.
My faith in the transplant guidelines is not absolute, but based on my experience, I am more willing to trust the judgement of medical professionals than the opinions of families who are suffering terribly and are not objective in their thinking. As I said before they are frequently not disposed to understand the information they receive on extremely complicated issues.
Perhaps not on your side of the pond.
The hospitals I have worked in would not release information unless specifically directed to do so by the patient and a signed waiver along with it.
The hospital must provide the proper paperwork for a release of information.
It would seem fishy to me if the option were presented and she refused it; but it may well be that the hospital simply has not provided that option.
That is why I would like to see documentation. Depending on the options exercised would decide to me whose actions are fishy here.
Let’s not forget, she may well have reasons not to provide the full medical details about the child, but the hospital is likewise in a position to not want full disclosure.
If there are truly other factors involved in this transplant that disqualify it as an option, then this seems like a no-brainer option to me.
If the hospital disclosed these reasons, the publicity would go away.
If the hospital cannot, then the hospital can specify why they cannot and put the publicity onus back upon the mother. And the publicity again goes away.
This seems a lot like poor PR at best.
If the hospital disclosed these reasons, the publicity would go away.
If the hospital cannot, then the hospital can specify why they cannot and put the publicity onus back upon the mother. And the publicity again goes away.
This seems a lot like poor PR at best.
- Status