Snipped for space and bold by me
http://www.huffingtonpost.com/2013/06/05/sarah-murnaghan-lung-transplant-_n_3392862.html
http://www.nbcnews.com/health/judge-orders-girl-added-adult-lung-transplant-list-6C10213393
"
It is not clear why everyone now waiting at the bottom of any transplant list would not seek relief in federal court," Caplan said. "Unless the judge has reason to think the lung distribution rules are simply a product of age discrimination and nothing more -- which seems highly unlikely -- then this becomes a troubling instance of non-doctors deciding who is the best candidate to receive a lung or other scarce medical resource."
Caplan is an ethicist who was raising understandable questions after the judge's order to suspend the "Under-12" rules until the June 14th hearing to consider the fairness of them as applied to children, in this case, Sarah. In that June 5th article, it also states, "The ruling, which grants a temporary restraining order,
applies only to Sarah, although Baylson indicated that he would consider a similar move for another child in Sarah's circumstances, if a family presented the case in court." So, while this judge ruled on the particular case as brought to court, and that ruling applied specifically to Sarah, his intention was that the Under-12 issue be considered as applies to
all children. With his court-orderd suspension, that meant that for those 10 days Sarah's placement on the list would be determined by severity of illness, not age. In Region 2, Sarah's region, 222 people are waiting for lung transplants, including six children 10 and younger. So theoretically, (though not practically speaking) 6 children could stand a chance at getting put onto the adult list of 216,
where they would be placed still in accordance with urgency/degree of illness. In this article, Caplan was understandably concerned
at this point in time (June 5) that that could undermine the existing transplant process with a series of court cases. But the decision was subsequently and fairly quickly made to allow for a review process for these kids on an individual case basis, so the fears he expressed are now put to rest. The rules as written weren't changed (kids under 12 still get put on a pediatric list by region), but the decision that was made did at least afford parents of Under-12s an option for an individual case "review" in the event their child becomes critical (and assuming they are even big enough to be able to use modified adult lungs). We're talking about hope for
less than half a dozen kids, here--no promises, no rule changes unless the transplant review process deems the child a good candidate for an adult lung. And this review process is something parents can resort to without having to go to court like Sarah's parents did, thus appeasing those who feared multitudes of lawsuits rolling in after this case.
ETA: "Murnaghan's family 'did have a legitimate complaint' about the rule that limited her access to adult lungs, said ethicist Arthur Caplan, of the NYU Langone Medical Center in New York."
http://www.myfoxmemphis.com/story/22584902/girl-who-took-on-transplant-rules-gets-new-lungs
At first the rule was just for this one little girl, and with the cameras rolling and the public thinking that it sounds cruel to deny a transplant to a child (without thinking about why those rules are in place), it definitely gives the appearance, IMO, of using the media to get the rules changed just for you.
Now the OPTN has voted to create a special review process for children under 12, and I don't have a problem with that, as that means the rule is not just for one or two people and anyone who couldn't get the media on their side is just out of luck. If there's a review process that is applied evenly, that's okay in my book. But I did not think it was fair for a judge to be making a medical decision. It was based on the media and certain politicians trying to make it look like children don't usually receive adult-sized lungs because of death panels or discrimination, when it is actually a medically-based decision that depends on a lot of factors.
But isn't that historically the way things have always changed (hopefully for the better)? One landmark case paves the way for positive change for a multitude of those coming after. I'm not going to fault any parent pushing for change for their own kid if the problem is an issue of unfairness which is also negatively impacting other kids. Sure their immediate concern is their kid--but that doesn't mean the decision itself is good for only their kid. JMO, but I'm not so sure that they "got the media on their side," so much as they raised an awareness that few outside of this system know about. I know I didn't know exactly how this worked until reading it myself this past week, and I'm all for the review process approach on an individual basis for these kids (none of whom, I might add, have brought on their own illness as a result of their own bad choices). If older children are transferred to an adult list by the review team b/c they are considered by their doctors to be a candidate for adult lung transplant, AND if they are at the top of that new list due to being the sickest--which is what this is about--then, yes, I say give them the chance.
