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(CBS News)   It took a court order, but a 10-year old girl with only weeks to live is now allowed to receive adult lungs   (cbsnews.com) divider line 25
    More: Strange, lung transplant, court orders, adult lungs, suspend the rules, Robert Bales, lungs, Lou Barletta, Kathleen Sebelius  
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4560 clicks; posted to Main » on 06 Jun 2013 at 1:00 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2013-06-06 11:46:55 AM
8 votes:
And the person who is going to die because they aren't getting those lungs? What's that person's name?
2013-06-06 01:15:34 PM
3 votes:

Serious Black: skullkrusher: DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?

why does that matter? Did she skip to the head of the line or is this ruling just a matter of her not being forced to the back of it?

From what I've read, the ruling places her on the list as if she were 12 years old and eligible to receive an adult pair of lungs. That means if she gets a pair of adult lungs, somebody else necessarily will not get those lungs, and that someone else will almost certainly die from not getting a transplant.


right but my understanding is that she is not being pushed to the head of the line, she is merely not forced to wait until there are no adult recipients waiting for lungs. I haven't seen any indication that she is being given priority - she is just not being held back from receiving them until all others have had a shot.

So, of course she is taking lungs that might go to someone else but that's the case for anyone of any age on the recipient list.
2013-06-06 01:45:22 PM
2 votes:

skullkrusher: Serious Black: What do you think the organ donation list is? It's a priority queue. By being considered as if she is 12 years old instead of 10, she jumped ahead of a lot of other people on the list. Just because she may not be (almost certainly isn't) priority #1 doesn't mean she isn't being prioritized ahead of a lot of other people now because of the change. And if she does get a set of lungs because of this reprioritization, somebody else inevitably will not get them.

but the reason she was in the back of the list was an arbitrary rule about adult lungs in younger patients. It'd be like saying the red-heads have to wait until all others have been given a shot at an available organ and then changing that policy (even if only in one instance at the moment) and then saying that that ginger is jumping ahead of people. Technically, yes, but not unfairly so.


KiltedBastich: Gotta agree with skullkrusher here. The point is that there should not be an arbitrary limit. Triage still applies. The lung she needs would still have to be small enough and the right blood type, and it would still be allocated based on severity of need. All this ruling really does is allow those standards to be applied to her, rather than a rubber-stamp "Not Eligible For Transplant" ruling.


She wasn't stamped as not being eligible for a transplant. She was simply placed on a waiting list for pediatric lungs. Part of the reason there is a separate list for adult and pediatric lungs is that there is little research on how a child will handle adult lungs. Will the child turn out just fine? Will they not be able to breathe as a result of potentially jamming the lungs into a cavity too small for them? We simply do not know.

Let's not gloss over the ethics here. Regardless of this ruling placing the girl on the adult transplant list, there are far too few sets of lungs available to ensure everybody on that list will get a transplant. By ordering that this 10-year-old girl be considered an adult for transplant purposes, she now qualifies for a set of lungs that, if she gets them, somebody else will not get. That somebody else will die. What makes that person's life worth less than the girl's life? Because they didn't get media attention drawn to their case?

Needing an organ donation is inherently a tragic situation. We argue that this girl deserves lungs because she has a name and a face to us now. The rest of the people on the list don't have those to us. That doesn't mean they aren't any less deserving. Their deaths will be tragic.
2013-06-06 01:06:39 PM
2 votes:

hardinparamedic: it was as an emergency order because the court felt that it would not be able to wait for them to re-examine the policy.

they were tired of listening to the media ask them to make an exception for this girl.

//if we're honest.. There were almost certainly better candidates with a longer-term recovery prognosis, but the kid got the media attention.
2013-06-06 01:04:04 PM
2 votes:

hardinparamedic: DamnYankees: I understand that, but by being put on the list at all, she's displacing everyone who would go below her. I feel very badly for this girl and her family, but I also feel badly for everyone else on the list. I'm not sure why this person is getting precedence.

Probably because her condition is all but curable with a transplant, and she's a 10 year old child, which means she's much more likely to survive the surgery than the 70 year old guy who smoked for 40 years.


The person below her may not be a 70-year-old guy who smoked for 40 years. It may be a 14-year-old girl who has similar health problems to her.
2013-06-06 12:30:09 PM
2 votes:

DamnYankees: This is why we let doctors and transplant boards make these decisions. Not judges, not you and not me. There's a reason about age cutoffs, and it shouldn't be overturned by a judge.


The problem is that, as pointed out in TFA, the rule was made a long time ago, and may no longer be valid thanks to advances in organ procurement and selection. The arbitrary age range may also be flawed as well.

I do agree with you, though, that the courts intervening create a dangerous president for anyone who has enough money to take transplant boards to court.
2013-06-06 07:19:01 PM
1 votes:

Magnus: SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.

Actually, that is precisely the spirit of life.  Maybe not our general definition of civilized life, but in a battle for your own survival it definitely is the way it happens.  Survival instincts are very powerful.  But, yeah, no guarantee.

If the person who gets booted down the list files suit, that'll really eff things up in this case.  Hmmm, who to choose, who to choose?


That can't happen with the transplant list. I also wonder how many people are aware of the number of organs that have been donated and are eligible for transplant don't get used - mostly because a match to a needed organ occurs in a place too far away, and there is no 'meet the organ in the middle' plan. Adding to the list may or may not affect anyone else on the list - and may or may not even save her. It just buys her the same shot everyone else on the list has.
2013-06-06 07:08:23 PM
1 votes:

DamnYankees: I understand that, but by being put on the list at all, she's displacing everyone who would go below her. I feel very badly for this girl and her family, but I also feel badly for everyone else on the list. I'm not sure why this person is getting precedence.


You are overlooking that in some cases the rule is capricious - and has it origins by and large in size matches. If the girl is big enough for the lungs, she should be allowed to at least be on the list to get them. The list doesn't guarantee a match - and she's not at the top of it so no precedence, just a chance.

Oh and please everyone (who doesn't believe in a mythical being who would rather your meat rot than be used to save a life) please consider joining a donor registry - every little bit helps...
2013-06-06 05:12:35 PM
1 votes:

studs up: bgilmore5: BTW, the Repubs don't give a damn about the sanctity of life

I was informed that this is a major problem. Pro-Lifers run that party. Has someone changed the definition of "sanctity of life" while my lappy re-booted?



Self-described "pro lifers". They believe a woman should carry a child to full term even if it means she could die from the complications.  They also believe by political affiliation that once that baby is born society should say "fark you" if you are ever in need. I stand by my statement.
2013-06-06 04:08:14 PM
1 votes:
Sigh i meant 100%
2013-06-06 03:22:57 PM
1 votes:

BafflerMeal: pseudoscience: skullkrusher: KiltedBastich: skullkrusher: Serious Black: UNOS, the United Network for Organ Sharing, last revised the rule in 2010. What's changed since then that pediatric cases can handle adult lungs? What's change that makes having two separate lists for organs irrelevant?

I don't know. IANAD. I am going by the information I have and discussing the ethical issues about her bumping someone off the list. Why are there 2 separate lists? Why is age 12 important? Is it based on body size?

Agreed. Furthermore, If it's body size, then why not just say body size instead of setting an arbitrary age limit? Appropriate size of the organs is already a triage consideration. You're never going to get the lungs from a deceased 7 foot basketball player transplated into a sick 3 foot midget, for example.

right. If it is a sizing issue, having an arbitrary age seems rather stupid. Based on the brief details in TFA, however, that seems to be the only medical reason for the different lists

It is very likely more than just size:

One of those facts, he says, involves statistics showing children receiving adult lungs or even pieces of the organ have a poor survival rate after surgery.

The real point is that there is medical basis for current policies. If people think those should be changed, that's fine. But leave it up to experts to figure that out, not some judge who knows nothing about it.


Correct answer most of the time.

That being said, the boards are also fallible and the criteria weird sometimes.  Worked with a lot of Lung/Heart transplants over the years, peds and adults.  And sometimes the decisions seemed rather capricious.  However keep in mind, it is a *lot* more complicated than a simple sorting list.  Organ implantation criteria is an incredibly complex matrix of physiological and social issues.  It is so complex in fact that one cannot always say that because person A received and organ, person B did not.  Sometimes you can have a perfectly viabl ...

For anyone interested, here is the policy from UNOS:

One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.
2013-06-06 03:02:15 PM
1 votes:

KiltedBastich: skullkrusher: Serious Black: UNOS, the United Network for Organ Sharing, last revised the rule in 2010. What's changed since then that pediatric cases can handle adult lungs? What's change that makes having two separate lists for organs irrelevant?

I don't know. IANAD. I am going by the information I have and discussing the ethical issues about her bumping someone off the list. Why are there 2 separate lists? Why is age 12 important? Is it based on body size?

Agreed. Furthermore, If it's body size, then why not just say body size instead of setting an arbitrary age limit? Appropriate size of the organs is already a triage consideration. You're never going to get the lungs from a deceased 7 foot basketball player transplated into a sick 3 foot midget, for example.


Body size is imperfect. For that matter, age is as well. But none of us sitting here typing away at our computers knows nearly as much as the people who actually developed the criteria used by UNOS to prioritize those in need of donations. They have a brutal job. They have a thankless job. The doctors at UNOS aren't just siting in a room munching on popcorn and laughing maniacally while watching a live feed of this girl dying. I'm sure it eats at them that their rules will inherently result in one person dying while another lives. That is the very nature of organ transplantation in an environment where we have far too few organs and far too many people who need them.

Everyone sitting here yelling about how this 10-year-old girl deserved to be on the list as if she were an adult has an incomplete set on information about this case and what will happen if, because she has been moved up on the list, somebody else gets denied the lungs she gets. UNOS surely had justification for the age rule when they implemented it. Maybe it doesn't need to be there anymore. Armchair quarterbacking will not solve the problem though.
2013-06-06 03:01:06 PM
1 votes:

Trey Le Parc: bgilmore5: Truther: SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.

Lemme guess - you are a liberal Democrat...

/What do I win?

You must be a Republican. You make all your decisions based on emotion. No amount of scientific evidence is necessary. Medical decision must be made purely on whether or not the sick white person is like you. "Teri Schiavo was fully functioning when those judges killed her."

Generally, champ, liberals condemn Republicans for being unfeeling gestapo property rights Nazis more interested in money than the sanctity of life.  You need to get your talking points straight if you're going to fall into lockstep with your progressive overlords.


Everyone is a liberal or conservative. I forgot. Are you saying Republicans embrace logic and science? There's plenty to be said for your argument. If her brain had not liquified while Republicans paraded her corps around on TV, Teri Schiavo probably would agree Republicans are "unfeeling gestapo property rights Nazis more interested in money than the sanctity of life." BTW, the Repubs don't give a damn about the sanctity of life.
2013-06-06 02:47:08 PM
1 votes:

skullkrusher: Serious Black: UNOS, the United Network for Organ Sharing, last revised the rule in 2010. What's changed since then that pediatric cases can handle adult lungs? What's change that makes having two separate lists for organs irrelevant?

I don't know. IANAD. I am going by the information I have and discussing the ethical issues about her bumping someone off the list. Why are there 2 separate lists? Why is age 12 important? Is it based on body size?


Agreed. Furthermore, If it's body size, then why not just say body size instead of setting an arbitrary age limit? Appropriate size of the organs is already a triage consideration. You're never going to get the lungs from a deceased 7 foot basketball player transplated into a sick 3 foot midget, for example.
2013-06-06 02:35:55 PM
1 votes:

Truther: SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.

Lemme guess - you are a liberal Democrat...

/What do I win?


You must be a Republican. You make all your decisions based on emotion. No amount of scientific evidence is necessary. Medical decision must be made purely on whether or not the sick white person is like you. "Teri Schiavo was fully functioning when those judges killed her."
2013-06-06 02:03:24 PM
1 votes:

Magnus: Serious Black:

Let's not gloss over the ethics here. Regardless of this ruling placing the girl on the adult transplant list, there are far too few sets of lungs available to ensure everybody on that list will get a transplant. By ordering that this 10-year-old girl be considered an adult for transplant purposes, she now qualifies for a set of lungs that, if she gets them, somebody else will not get. That somebody else will die. What makes that person's life worth less than the girl's life? Because they didn't get media attention drawn to their case?

But, there is no guarantee now that if a set of lungs that matches her would matching anyone sitting on that list.  Previously, she had no shot at those lungs even if she were the only one to match.  Now, she has a shot.  But, if someone else is a match, then your question stands.  I think it was an ethical issue just saying "no, you're under 12, therefore we won't even consider you."  That issue of a blanket No in this case is resolved.  I support that resolution.  I hope they come to that conclusion in the review of the policy for all future cases.


She was never not on the priority list. She was at the bottom of the list as she is a pediatric case and is cross-listed on the pediatric donor list. This ruling moves her ahead of people who are not on the pediatric donor list.
2013-06-06 01:26:53 PM
1 votes:

SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.


No. A line does not have to be drawn. There need to be some rules guiding the precedence of patients in the transplant list - there does not need to be a line over riding medical judgement and the other rules based solely on an arbitrary age threshold.

RTFA.
2013-06-06 01:24:29 PM
1 votes:

skullkrusher: Serious Black: skullkrusher: DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?

why does that matter? Did she skip to the head of the line or is this ruling just a matter of her not being forced to the back of it?

From what I've read, the ruling places her on the list as if she were 12 years old and eligible to receive an adult pair of lungs. That means if she gets a pair of adult lungs, somebody else necessarily will not get those lungs, and that someone else will almost certainly die from not getting a transplant.

right but my understanding is that she is not being pushed to the head of the line, she is merely not forced to wait until there are no adult recipients waiting for lungs. I haven't seen any indication that she is being given priority - she is just not being held back from receiving them until all others have had a shot.

So, of course she is taking lungs that might go to someone else but that's the case for anyone of any age on the recipient list.


Gotta agree with skullkrusher here. The point is that there should not be an arbitrary limit. Triage still applies. The lung she needs would still have to be small enough and the right blood type, and it would still be allocated based on severity of need. All this ruling really does is allow those standards to be applied to her, rather than a rubber-stamp "Not Eligible For Transplant" ruling.
2013-06-06 01:13:38 PM
1 votes:
"This is an incredibly agonizing situation where someone lives and someone dies," said Sebelius.

"Based on their age," responded Barletta. "Based on their age."


Or, you know, based on the fact that someone that young that's already in end-stage CF failure is going to get maybe another 6 months of life out of the lung (CF... kind of keeps going even after transplants iirc) whereas the older patient that would otherwise get it would potentially live until they died of old age (well, lungs are a dodgy one, so about 5 years on average... but still).

Or based on the fact that transplant rejection in general is frequently higher in very young patients like this.

Basically, you're outright murdering someone that would be near-guaranteed survival with this transplant so that you can give the kid a long-shot chance of prolonging her sickness a few months before dying anyhow.

So... good job.

CBS News spoke to a leading specialist who said these rules may be out of date and that there is no medical reason why a child cannot receive an adult lung if it is the right blood type and size.

Must be legit if they won't even name their source on that.  Not like decades of expertise went into current policy, I'm sure if one anonymous source claiming unverified credentials says it it must be true.  This is how I know that 9/11 was an inside job, the moon landings were faked, and JFK was actually killed by the Martian Manhunter using mind bullets from the grassy knoll.
2013-06-06 01:12:04 PM
1 votes:

SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.


Um....what?
www.biography.com
2013-06-06 01:05:38 PM
1 votes:
So then the doctor who thought it would be safe to say, "dammit, I could fix this right NOW if only the law allowed this type of procuedure!  <sigh> I'm sorry.", might have to admit that it can't be done.
2013-06-06 01:04:59 PM
1 votes:

DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?


why does that matter? Did she skip to the head of the line or is this ruling just a matter of her not being forced to the back of it?
2013-06-06 12:26:01 PM
1 votes:

hardinparamedic: Probably because her condition is all but curable with a transplant, and she's a 10 year old child, which means she's much more likely to survive the surgery than the 70 year old guy who smoked for 40 years.


This is why we let doctors and transplant boards make these decisions. Not judges, not you and not me. There's a reason about age cutoffs, and it shouldn't be overturned by a judge.
2013-06-06 12:13:56 PM
1 votes:
There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.
2013-06-06 12:05:13 PM
1 votes:

DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?


Joey.  But nobody likes Joey, so it's okay.
 
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