Special-Needs Girl Denied Kidney Transplant in Phila.

[Professor Yaffle]

This is a 3 year old, not a 15 year old. It would have to be a very, very small adult for the kidney to fit. It sure sounded to me like adults were going to "volunteer" a child for the donation.

I repeat:

A child can receive an adult kidney, since by a certain age (usually older than 2 years) there is enough space in the belly to fit the new kidney.

http://www.aakp.org/aakp-library/Pediatric-transplant/

I think the AAKP is more likely to have specific knowledge on this than a medical ethicist is.

 

[Exitzero]

I'll just say this - Transplants are a tricky thing. For live donors, the procedure not only presents a risk to the person receiving the organ, but also the person donating the organ. For transplants from the deceased, there's the issue of being sure the organ goes to the most suitable candidate.

There are a lot of factors that need to be weighed. It's possible that the hospital thought that the long term picture for the patient in terms of keeping up with the required medicine and resulting improvement of quality of life isn't worth the risk to the live donor. It's really hard to judge the situation without some more in depth explanation.

Giving an organ to the wrong person can have tragic results. Example: fiance used to work for a transplant pharmacy - she had a patient who started to routinely not come in to pick up her meds - missing many days of medication. She tried all legal options of getting her to come in to pick up her meds, and actually had to resort to some not so legal methods (e.g.the patient was a college student so she would purposely call the patient's parents and leave a message saying something akin to "This message is for *patient* and I just want to remind you that you still need to pick up your meds, you're a week late"). That would usually work, and patient would come in looking very, very ill with yellow skin & eyes, etc. She left the pharmacy to go back to school and later found out that the patient had died as a result of complications with the transplant - in other words, the body rejected it most likely because she wasn't taking her meds properly. She found some article in the student newspaper about the patient's death and got angry at it; "Maybe she wouldn't have died if she took her damn meds like she was $*@#&@* supposed to! They could have given that liver to somebody who would have taken care of it!"

There is a risk to the donor, but it is small. I had prepared to donate 2 years ago (my friend died before the surgery could take place.). I would have been in the hospital for 2 days, out of work for 2 weeks. That hospital has never had someone die due to donating a kidney. You don't even need to be that close a match anymore (although my friend and I were...the transplant team couldn't believe we weren't related!), because the new anti-rejection drugs are really good.

 

[Dancing David]

I know there is a big uproar about requiring alcoholics to be sober for 6 mos before getting (or qualifying?) for a new liver. How is an alcoholic who is not responsible for her disease,

That is a subject of some debate, and we should not derail this thread. But many do not view alcoholism as a disease.

 

[Architect]

If this had happened in the UK, we'd be hearing all about "death panels" by now.

 

[Skeptic Ginger]

There isn't just "one kidney" to be decided upon. They have an extended family, many of whom said they would donate. They have never asked for Amelia to go on the list for donors. No one else will be going without a kidney because she gets one.

Do you know this personally or are you going by the OP link? Someone else suggested this was an unsubstantiated claim by the parents as they don't know if there is a match, and that an adult kidney could not be used so it would be unethical for a live donor as consent would be specious.

Once again, you are merely taking the parents' claims and I'm only saying I don't believe that single one sided anecdote is sufficient to draw conclusions about an injustice.

 

[Skeptic Ginger]

From Wildcat's quote above;



Doesn't sound like he is very well informed...

http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/treatment_methods/
My bolding

http://www.aakp.org/aakp-library/Pediatric-transplant/

I stand corrected about the child donor issue. Thanks for the more reliable info here.

 

[Professor Yaffle]

Do you know this personally or are you going by the OP link? Someone else suggested this was an unsubstantiated claim by the parents as they don't know if there is a match, and that an adult kidney could not be used so it would be unethical for a live donor as consent would be specious.

Once again, you are merely taking the parents' claims and I'm only saying I don't believe that single one sided anecdote is sufficient to draw conclusions about an injustice.

As to tissue type matching: Each parent has a 50% chance of being a perfect match, and a sibling (if there were any over 18) would have a 25% chance of a perfect match and a 50% chance of a 50% match. They would also have to be a blood type match (or group O)

In the even of there not being a good enough match in the family members volunteering, there is still the possibility of paired donation.

 

[Exitzero]

Do you know this personally or are you going by the OP link? Someone else suggested this was an unsubstantiated claim by the parents as they don't know if there is a match, and that an adult kidney could not be used so it would be unethical for a live donor as consent would be specious.

Once again, you are merely taking the parents' claims and I'm only saying I don't believe that single one sided anecdote is sufficient to draw conclusions about an injustice.

All I have to go on is what the parents have said since the story broke. I have been following all of their interviews, and I read the mother's blog. I can't imagine why she would lie about not wanting the child on the donor list. She seemed very adamant that they were not asking for that.
Until the doctor makes a statement, it is all we have to go on. Better to err on the side of caution and make sure that this child is being treated fairly.

 

[Skeptic Ginger]

All I have to go on is what the parents have said since the story broke. I have been following all of their interviews, and I read the mother's blog. I can't imagine why she would lie about not wanting the child on the donor list. She seemed very adamant that they were not asking for that.
Until the doctor makes a statement, it is all we have to go on. Better to err on the side of caution and make sure that this child is being treated fairly.

There are dozens of blogs and sincere statements from parents about how they perceive denied access to medical care for their children. Recent news stories come to mind are the Terri Schiavo case where the parents felt the husband shouldn't have control of medical decisions to the multiple cases of parents begging to have their brain dead children cared for on ventilators in hospital ICUs. There are also a couple anti-vaxxer parent blogs incorrectly blaming vaccines for the autism and deaths of their children.

And I cited an article describing the outcome of multiple cases of organ transplants going to mentally disabled patients.

So this parent's blog and the parents' interviews are not all we have to go on.

 

[Skeptic Ginger]

It would appear there is an update:
NJ disabled girl's parents narrow criticism

PHILADELPHIA (AP) — The parents of a 3-year-old New Jersey girl who claim she's being denied a kidney transplant because of her mental disabilities said their problems may be with one doctor, and not The Children's Hospital of Philadelphia.

The idea of medical decisions being based on misled public outcry is most unfortunate.

Currently our county is wasting millions on providing epinephrine to every fire engine when previously it was available only on Medic units. A child died and while the problem was 911 wasn't called soon enough the parents went on a crusade to blame the fact the first responding engine didn't have epinephrine. The Medic response time is minutes. While it might be nice to save that one child in a million, the cost spent on training and continually resupplying every engine with EpiPens that are continually replaced as they have a short shelf life is an extremely poor use of limited resources.

"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is problematic.

 

[Exitzero]

The mother's blog only complained about the doctor and social worker all along. The problem is that it is nearly unheard of for a transplant team to go against the doctor. The mother was justifiably outraged at the doctor's attitude. This was her child's life in the balance, and this doctor (and I'm sure many like him) have attitudes that were reprehensible 30 years ago and are still practicing. They need to be called on the carpet. The hospital needed to be made aware of his behavior. Other medical professionals need to know that is unacceptable.

The other issues you listed have nothing to do with this case.

They are not asking for special treament. They are actually asking for a little bit less than other people's kids get. They are not asking for anyone to go without a kidney so their child can live. They are not fighting a futile battle to keep a child with no hope alive. They are trying to save their child's life.

 

[Kevin_Lowe]

They don't have to take one from a kid. Children do just fine with an adult sized kidney.

We're all going on googled snippets at this point, but here's another one, from here:

The leading difficulty with transplanting an adult-sized kidney into an infant or small child is supplying it with adequate blood flow. The child’s smaller heart, blood volume and vessels are insufficient to satisfy the blood flow demand of an adult-sized kidney on their own. Blood pooling in the transplanted kidney clots, and the kidney stops functioning.

Our kidney transplant program surgeons solve this problem by placing the child on intravenous and gastric-tube fluids to increase blood volume for at least 12 months after the transplant. To date, this method has achieved one-year survival of every adult-size kidney transplanted into infants and small children.

Based on that site transplanting adult kidneys into children is possible and in fact highly likely to be successful, if and only if you keep them on IV and gastric fluids for at least 12 months. Otherwise it sounds like it doesn't work.

It's not clear whether the statement of the ethicist in question that a transplant was contra-indicated was right or not, but it seems at least possible that the difficulties in keeping a child with serious mental problems on IV and gastric fluids for 12 months might be a factor.

And life per dollar cost...well, that's an alley I won't be going down, thank you very much.

Quite a few people have picked up the idea from somewhere that this is a moral alley you don't go down. I don't quite know where it started or why they believe it, but I'm pretty sure those people have never thought the matter through.

There is a finite medical budget. Some of it's government money and some of it's insurance company money but in the end there is only so much of it to go around. If you don't know what medical problems you are going to have it's rational to want that money spent in whichever way buys the greatest amount of life and health per dollar. If you do anything else, people die unnecessarily.

Of course when it's you or your kid that has a problem that's cost-inefficient to treat, it's also entirely human to think "Screw those other people, I want that cost-inefficient treatment. Who cares if two other people die so that the one person I care about lives?".

Invent a cornucopia that produces unlimited medical resources and sure, you can give everyone the best treatment possible. Until then we have to decide that some people live and some people die, and the best and fairest way to do it is to buy the most cost-effective treatments until the money runs out, and then let the rest die. It's not a happy thought but reality isn't a happy place, and any other possible distribution of the money means more people die or suffer unnecessarily.

 

[Kevin_Lowe]

The mother's blog only complained about the doctor and social worker all along. The problem is that it is nearly unheard of for a transplant team to go against the doctor. The mother was justifiably outraged at the doctor's attitude. This was her child's life in the balance, and this doctor (and I'm sure many like him) have attitudes that were reprehensible 30 years ago and are still practicing. They need to be called on the carpet. The hospital needed to be made aware of his behavior. Other medical professionals need to know that is unacceptable.

Suppose you had the choice of 40 more years of healthy life, or 40 more years with WHS. Which would you choose? Read that list of effects again, and the chance that you will be able to feed yourself, wipe yourself or communicate in sentences.

If you choose the healthy life, the next step is to change the ratio from 40:40 to, say, 30 years of healthy life to 40 with WHS. Which would you pick? Fiddle with the numbers until you find a point where you are indifferent to the two choices - where N years of healthy life and 40 years of life with WHS seem about equally desirable.

What's your point of indifference?

I'm not asking you what you think it would be virtuous or politically correct to say, or asking you to put a value on anyone else's life or experience. I'm just asking you how you personally value two different possible future life experiences for yourself.

 

[MatildaGage]

Is that because they don't think you're intelligent enough to be worth it?

According to the mother's blog post that is not the only reason the dr declined to do it. He cited medical risks.

I have been denied desperately needed medical care numerous times due to the individual practitioners not feeling comfortable with treating someone with an unfamiliar complication, not wanting to take on a high risk pt, even not wanting to perform the procedure at the only hospital I can go to (even if they had privileges there but preferred another).

Incidentally I was denied a needed procedure for decades, without which I was in near death situations numerous times, because they didn't believe me that I accepted the sterility that would come with the procedure. Even when I offered to sign a notarized statement to that effect...

I've worked in healthcare for decades and hospitals indeed do cherry pick when it suits them. They're businesses. Whenever I hear stories like the mom mentioned in the OP what I know we are witnessing is the pain of realizing hospitals are businesses who act according to their own interests, not altruism at all times.

 

[Exitzero]

Suppose you had the choice of 40 more years of healthy life, or 40 more years with WHS. Which would you choose? Read that list of effects again, and the chance that you will be able to feed yourself, wipe yourself or communicate in sentences.

If you choose the healthy life, the next step is to change the ratio from 40:40 to, say, 30 years of healthy life to 40 with WHS. Which would you pick? Fiddle with the numbers until you find a point where you are indifferent to the two choices - where N years of healthy life and 40 years of life with WHS seem about equally desirable.

What's your point of indifference?

I'm not asking you what you think it would be virtuous or politically correct to say, or asking you to put a value on anyone else's life or experience. I'm just asking you how you personally value two different possible future life experiences for yourself.

Who EVER gets to pick? You get one life. It might be a healthy one, it might not. You might be born with a disability, you might get one when you are 60. You might lead a charmed life and never even get a splinter.
What does choice of getting a disability have to do with anything?

The choice here isn't about living with a cognitive disability or living without one. It's about living with what you've been dealt, even if some people think you would be better off dead.

 

[Exitzero]

According to the mother's blog post that is not the only reason the dr declined to do it. He cited medical risks.

I have been denied desperately needed medical care numerous times due to the individual practitioners not feeling comfortable with treating someone with an unfamiliar complication, not wanting to take on a high risk pt, even not wanting to perform the procedure at the only hospital I can go to (even if they had privileges there but preferred another).

Incidentally I was denied a needed procedure for decades, without which I was in near death situations numerous times, because they didn't believe me that I accepted the sterility that would come with the procedure. Even when I offered to sign a notarized statement to that effect...

I've worked in healthcare for decades and hospitals indeed do cherry pick when it suits them. They're businesses. Whenever I hear stories like the mom mentioned in the OP what I know we are witnessing is the pain of realizing hospitals are businesses who act according to their own interests, not altruism at all times.

I've read the blog, and I only read that "mental retardation" was the only reason the doctor gave. The mother even asked him if that was what he meant, and he said "yes". He did talk about risks, but they are the risks that everyone faces getting a kidney transplant, not anything unique to this child.
Yes, hospitals are businesses. And businesses are not allowed to discriminate under US law. Businesses also need to change with the times, or risk losing their financial base. If a doctor on a staff refuses to do surgery on a child because of "mental retardation", the hospital needs to know that the public will not stand for that.
This may just be the case of a doctor with an attitude problem, but that needs to be addressed. People with disabilities are DYING because of attitude problems.

 

[Skeptic Ginger]

Who EVER gets to pick? You get one life. It might be a healthy one, it might not. You might be born with a disability, you might get one when you are 60. You might lead a charmed life and never even get a splinter.
What does choice of getting a disability have to do with anything?

The choice here isn't about living with a cognitive disability or living without one. It's about living with what you've been dealt, even if some people think you would be better off dead.

You keep leaving out the part about there isn't enough to go around and sometimes someone has to choose.

 

[Professor Yaffle]

You keep leaving out the part about there isn't enough to go around and sometimes someone has to choose.

Which (again) is not a factor here at all because we are talking about living donor, not cadaver donor.

 

[Kevin_Lowe]

Who EVER gets to pick? You get one life. It might be a healthy one, it might not. You might be born with a disability, you might get one when you are 60. You might lead a charmed life and never even get a splinter.
What does choice of getting a disability have to do with anything?

The choice here isn't about living with a cognitive disability or living without one. It's about living with what you've been dealt, even if some people think you would be better off dead.

That wasn't the question I asked. Do you think you might try to answer the question I actually asked?

It's not about whether someone would be better off dead, but how much healthy life we can buy with a finite health budget.

 

[Kevin_Lowe]

Which (again) is not a factor here at all because we are talking about living donor, not cadaver donor.

Surgery costs money even if someone donates the organ, and we can do a finite number of surgical procedures per unit time.

As I said earlier, if you can make a magical machine that gives us unlimited surgeons, unlimited nurses, unlimited hospital space and unlimited equipment then and only then will everyone get treated for everything. Until then there isn't enough to go around and we have to choose who lives and who dies.

This of course does not apply if the family is paying all costs out of their own pocket without any government or insurance company involvement.