Teen with Months to Live Denied Heart Over "History of Non-Compliance"

http://gawker.com/dying-teen-denied-transplant-over-history-of-non-compl-1119809228



Anthony Stokes, a 15-year-old boy from DeKalb County, Ga., has less than six months to live. A heart transplant would save his life. But his hospital refuses to put him on the transplant list.

Why? Doctors told the family it was because of Stokes' "history of noncompliance": "They said they don’t have any evidence that he would take his medicine or that he would go to his follow-ups," his mother says). But friends tell Atlanta's WSB-TV it's "because Anthony has had low grades and trouble with the law."

“The non-compliance is fabricating, because they don’t want to give him a heart,” family friend Mack Major told Thomas. “This is unacceptable because he must lose his life because of a non-compliance.”

“They've given him a death sentence,” said Christine Young Brown, president of the Newton Rockdale County SCLC.

The hospital says it is "continuing to work with this family and looking at all options regarding this patient's health care." Transplant lists typically have strict guidelines for potential additions, and patients who are considered a serious risk for non-compliance—i.e., those who might refuse or be inconsistent with follow-up care—may be denied space.

But Stokes is 15. Georgia allows its residents to seal or expunge their juvenile records, enshrining into law the principle that underage "trouble with the law" is not a past indicator of future behavior—certainly not any more than "bad grades" might be. If the government of Georgia is willing to give Stokes a chance at a full and free adult life, why can't Children’s Healthcare of Atlanta?

 

Has this happened to other kids in GA?

 

So what if it has or hasn't happened before, that shouldn't even be the concern. It's a stupid, stupid guideline to begin with. Non-compliance with the law is quite separate than non-compliance with life-or-death aftercare.

I recall years ago an actor who shot himself in the head by accident on the set with a blank gun, his heart went to a convicted pimp in Vegas. Why? Because the pimp was given a chance and waited like everyone else and he said his new heart completely changed his whole outlook on life.

I'm sure this teen isn't thinking about effing with the law, or his meds once he gets a new heart.


Not for nothing @ death panels, welcome to the future..........

 

On the one hand I can say this isn't fair.

On the other though I can definitely see why the hospital would be leery of non-compliance.
I'm not saying that judging him on pas behavior is correct but what I am saying is as a benefit/risk ratio, patients who mess around with appropriate procedure afterward are a complete drain on the system. The medical system.

Unfortunately, in a case like this, the hospital cannot identify the exact factors that went into the non-compliance decision because of what (hawaii calls Hippa) the law covers. Doctors aren't going to arbitrarily make a decision to let someone die. But they can use their expertise to make decisions about who would benefit the most from a costly and time consuming procedure such as this one.

 

All of this. If I were his mother, I'd be fighting with everything in me to get him on that transplant list....that's a no brainer. With that said, this is only news because of his age. People are turned down for entry onto that list on a regular basis and for many reasons, including non-compliance. It's absolutely a benefit-risk issue. If he's added to the list and receives a heart...but fails to take his meds and follow up with providers, the transplant won't be successful. That is an organ wasted, that could've saved someone else on that list who would have been complaint with the aftercare procedures. What's incredibly sad is that this kid is only 15 and he must have some serious compliance issues with regard to his medical care to not be put on the transplant list. You don't get declined for missing a few appointments here and there, nor do you get declined because you've had some run-ins with the law as a juvenile.

I sincerely hope they can work this out because no 15 year old deserves to die without even a fighting chance for a transplant. Even with what must be a strong hx of non-compliance, I hope he's given another chance...the kid deserves a shot at life.

 

But what about people who are given new hearts, and lungs, and liver and kidneys because they smoked or from obesity or drug abuse?...You can't get more 'non-compliant' than that.

I'm just wowed at the fact that they are holding this over his head. Most teens feel invincible, and if he skipped doc appointments while he has his original heart in him, I could get that.

But I think once he goes through the physical trauma of a transplant, of his chest being cut open, the stress on his young frame, his sense of mortality will set in and he WILL get it together.

 

I certainly get what you're saying, and as a mom I would fight like HELL to get my son on that list. I definitely agree that his mindset would most likely change after going through such an invasive procedure.

People who need some sort of transplant due to their hx of smoking/obesity/drug abuse would also be denied if they showed non-compliance with the treatment options up until the point of needing a transplant though.

Again, it's frustrating to me that this scenario only gets attention when it's a child involved. What about the 50 year olds who are refused entry onto the list because even with a transplant they'll only live another 5-10 years. That's 5-10 additional years with their families! That's the potential to see their children wed, or meet their newborn grandchildren. I understand that there has to be guidelines for the whole transplant process, but how do you outline in writing why one life is more valuable than another?

I'm not trying to take away from this boys case...like I said before, he deserves a chance at life. I just think the whole process for getting onto a transplant list should be reviewed at this point. Non-compliance is a real issue, but I don't think it should be that black and white (and again, because of HIPAA laws, we don't really know that it is that clear cut...there could be many other factors involved in the denial).

 

this story was on world news tonight...he has been put back on the transplant list...there is nothing like having a story hit national news and a hospital receive a backlash of negative attention

there is power in numbers

 

When people have to shame you into doing something, there is something morally wrong with you.

I was going to say that if this young man had the money. He would have never been off this list. He may have behaved like a child without a care but... guess what he is. Bill Clinton earned the bad heart and still got one. Fascism runs this country.

 

the absolute worst is if the story had not been picked up...the fact hat hospitals & people sitting at a desk make these decisions is a disgrace...at 15 years old he should be in line before an older man or woman...his grades and criminal record should have absolutely nothing to do with being put on a list

 

Luckily, grades and run ins with the law don't have anything to do with getting on a transplant list. That info came from his "friends" who were trying to save his life by getting his story out there, and fluffing it a little. Very glad his name is back on the waiting list, but I truly hope people didn't honestly buy into the tale of "they just didn't want to give him a heart" or "they're keeping him off the list for bad grades and brushes with the law". :smt017

 

the story I heard was that he was taken off the list due to a high risk of non compliance...meaning he wouldn't take his medication or go to doctors visits...how do they know that?

 

So then why deny him? Simply for non compliance?

 

TDK...yes, my understanding is that he was denied initially for non-compliance. Period. People don't get denied for a transplant due to bad grades...I have no doubt that was a fabrication to incite public outrage.

Lippy...he has to have a history of non-compliance.

According to another article:

http://www.reuters.com/article/2013/08/13/us-usa-georgia-heart-idUSBRE97C0YY20130813

patient had a history of not taking his meds as well as missing doctors appointments (both of which can kill a heart transplant patient, according to that article). There is also mention of the patient being "uncooperative" (family won't say why he was uncooperative, and the hospital can't release that info). It's really all about the patients history...he's 15 years old, but if he isn't mature enough to understand the severity of his situation (which is understandable at his age), and he doesn't have someone in his life to ensure he takes him meds religiously and makes all doctors appointments (which according to his hx, he didn't), then he'll die anyways. I imagine that's the situation the hospital was looking at. It comes back to risk/benefit. If you have say 15,000 people on a waiting list and a heart comes in...the hospitals job is to place that heart with the patient that is most critical, and where there is a realistic expectation of success. You can't get that with a non-compliant patient.

 

Yes fair enough, those who abuse booze or drugs and need a transplant may be compliant with their pre-transplant behavior, so I will give them that.

I also understand the parents suggestion/blame that it's because he's been a bad boy, rather than facing that their child doesn't take his meds, etc... but he needs to be given a second chance at it, IMO.
(I see he now has been).

I did not know middle-age factored into a denial. I can understand old age, but Larry Hagman got a new liver and lungs I think and he was like 65?


BTW, did you hear about this? It was big news here. Kids are not allowed to be on adult lists? She got two chances, btw.

 

To my knowledge, middle age doesn't factor into denials, but there are patients with more than one chronic condition...that's where I've seen denials based on the outcome only yielding 5-10 years. To me, that would be a successful outcome for a person with multiple chronic diagnoses. I'm all for children getting first dibs at these organs, but at the same time I don't think a middle aged person deserves to be denied just because the transplant isn't likely to add 20+ years to their life.

 

Why children first? I'm not ok with my mom needing a heart and being denied because she's close to 60 and a kid who is 10 getting it over her. The 10 year old could die in various ways so there's no real way to determine if they will necessarily live for a long time. Should be first come first served.

 

I don't think kids do get first dibs currently, but as a mom I'd want my child to have that organ over someone who's lived the majority of their life already. Again, this is where it gets difficult!! It's not my place to outline how one life is worth saving over another, but my heart says kids go first. JMO love.

It's not strictly first come first served either...my understanding is that it's usually condition + place on the list. They won't even consider you for a transplant list until you're at the stage medically where you need the transplant to live so there's no one just idly sitting by, mildly ill waiting for a transplant...but there are people worse off than others. I believe the stage of your disease plays a significant role in where you fall in line (as it should IMO).

 

Well its your kids, whether it be young or old sick or dying you want your kids to be considered over all others. Any parent would.

 

It's over money people...