Autistic man denied heart transplant

[The Minsky Moment]

Doesn't make a lot of sense to me.  What does autism have to do with ability to have a good outcome for a heart transplant?  I am aware of no connection between autism and circulatory issues or immunity issues that would affect transplant success.

If the concern is the ability of the patient to stick to a routine and take medication regularly, not only is autism not a logical disqualifier, but under certain manifestations the autistic patient may be considerably more reliable than an average non-autistic person.  That might not hold for this specific case, however.

[viper37]

It was hard enough for Karen Corby to hear that her autistic son would need a heart transplant to survive, but it was even harder to take the news that doctors wouldn't give him one.

"I was numb at first," Corby, of Pottsville, Pa., told ABCNews.com, remembering the phone call from Paul's cardiologist when she found out he wouldn't be placed on the transplant list. "Before she hung up, she told me to have a nice day."

Her son Paul, 23, has a left ventricle that didn't close after he was born, so his heart doesn't pump the right amount of blood. The Corbys found out in 2008, and were told it was time for a transplant in 2011.

The cardiologist at Penn Medicine told Corby that Paul was denied "given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior," according to the letter Corby released.

Paul's experience raises questions about how autism and other brain disorders should be factored into transplant decisions.

"It seems that they have looked at this person as a label rather than the unique qualities that this person has," Dr. Dan Coury, Autism Speaks' Medical Director for the Autism Treatment Network, told ABCNews.com. Coury said he has not met Paul or reviewed his medical records, but he is aware of the rejection from a Philadelphia Inquirer story.

Getty ImagesAn autistic man in Pennsylvania was denied a... View Full Size Getty ImagesAn autistic man in Pennsylvania was denied a heart transplant by the Hospital.
He said autism is one of many factors that should be considered in the transplant decision, but based on what he's read, he isn't sure why Paul was denied. He noted that Paul can carry on a conversation, has a good quality of life and has a social network to support him after the surgery.

Dr. David Cronin, an associate professor of transplant surgery at the Medical College of Wisconsin, told ABCNews.com he does not know the case, but organ transplant denial tends to be easier for people to accept because of an anatomic problem, such as calcified blood vessels that would prevent the successful implantation of a new kidney.

"Those no's are more acceptable than if somebody says, for example, 'You don't have enough insurance coverage,' or 'You still have behavioral problems like substance abuse issues,'" he said. "It's not like a CT scan where you can put it up and say,' Look. We can't technically do it.'"

Denials come because organs are a scarce resource, with three to four times as many people who need transplants as there are organs available. As such, he said, doctors look for transplant candidates to have good expected outcomes. For example, a dying patient who has a 1 percent chance of survival with a new organ would not be a good candidate because that organ could have gone to someone who could have lived a full life with it, he said.

The patient has to be able to take care of the new organ or have a support group to ensure that the organ doesn't go to waste, which can be an issue with mental illness, addiction and even autism, he said.

Whole Story

This one gives me pause. I see both sides of the issue very clearly, and agree with the arguments on both sides. Nonetheless, one would think that the decision should be based on a study of the individual person, not on the individual's diagnosis or medical chart alone.

It's the Obama death panels at work!

Seriously, I understand the board.  Such decisions should not be personalized or tailored to the individual person.  Otherwise, it takes way too much time and clouds the issues.
Until we can clone/make replacement organs, we are stuck with a supply problem, as the article states.

Organs must first go to people who would truly benefit from this.  Unless the doctors think a heart transplant would somehow help with his autism, I don't think it's a good idea to do it.  Unless of course the heart would go to waste if he didn't receive it.

[merithyn]

It's the Obama death panels at work!

Seriously, I understand the board.  Such decisions should not be personalized or tailored to the individual person.  Otherwise, it takes way too much time and clouds the issues.
Until we can clone/make replacement organs, we are stuck with a supply problem, as the article states.

Organs must first go to people who would truly benefit from this.  Unless the doctors think a heart transplant would somehow help with his autism, I don't think it's a good idea to do it.  Unless of course the heart would go to waste if he didn't receive it.

How does an autistic person not truly benefit from a transplant? It may not cure his autism, but as autism doesn't kill, I'm not sure how it should factor into this at all.

[garbon]

How does an autistic person not truly benefit from a transplant? It may not cure his autism, but as autism doesn't kill, I'm not sure how it should factor into this at all.

Viper is brain-dead.

Anyway given the bit that I quoted from the article, I really think this is all a non-issue as far as there aren't really enough facts in said article to really discuss the merits of either path.

[merithyn]

Viper is brain-dead.

Anyway given the bit that I quoted from the article, I really think this is all a non-issue as far as there aren't really enough facts in said article to really discuss the merits of either path.

I don't know. I think you brought up an interesting point that could lead to an interesting discussion. Should mental insufficiency factor into these kinds of decisions?

[garbon]

Viper is brain-dead.

Anyway given the bit that I quoted from the article, I really think this is all a non-issue as far as there aren't really enough facts in said article to really discuss the merits of either path.

I don't know. I think you brought up an interesting point that could lead to an interesting discussion. Should mental insufficiency factor into these kinds of decisions?

Except that we lack the facts in this particular case and it may be that mental insufficiency as you've termed it only plays one small part in assessment.

[The Minsky Moment]

Orans must first go to people who would truly benefit from this.  Unless the doctors think a heart transplant would somehow help with his autism, I don't think it's a good idea to do it.  Unless of course the heart would go to waste if he didn't receive it.

That makes no sense. 
Of course a heart transplant won't help his autism.  It will help his heart problem.  No reason to think it won't.
Autism doesn't ordinarily impact life expectancy either . . .

[The Minsky Moment]

How does an autistic person not truly benefit from a transplant? It may not cure his autism, but as autism doesn't kill, I'm not sure how it should factor into this at all.

Right.  This.

[merithyn]

Except that we lack the facts in this particular case and it may be that mental insufficiency as you've termed it only plays one small part in assessment.

That stops us from discussing it in general terms.... how?

[Malthus]

How does an autistic person not truly benefit from a transplant? It may not cure his autism, but as autism doesn't kill, I'm not sure how it should factor into this at all.

Right.  This.

I suppose it depends on the person. I have no idea what this guy's autism is like ("autism" covers a wide spectrum), but any mental condition could, potentially, lead to a worse outcome - not because the condition directly affects the transplant, but beacuse the condition (may, perhaps) affect the subject's ability to deal with the inevitable difficulties of caring for him or herself post-transplant.

The problem of course is that there is a very limited supply of organs. Give the heart to this person and you are denying it to someone else. If there is another potential recipient who has exactly the same prognosis but no autism, that person may well argue that he or she is the better risk, because lacking autism he or she can better deal with the process.

That being said, there is clearly a danger that this sort of reasoning becomes a test for the worthiness of the recipient.

[CountDeMoney]

Nonetheless, one would think that the decision should be based on a study of the individual person, not on the individual's diagnosis or medical chart alone.

Now that would be a nightmare in practice.

Not really;  doctors love every opportunity to cut someone up--particularly teaching hospitals.   Hell, why put together a homeless man's face after it was eaten, even though he'll never be able to pay for it?  Because they can.

Besides, when alcoholics are denied liver transplants, you could also say that this is based on the individual's diagnosis (someone suffering from an alcoholism diseases) and not the wholesale assessment of the human being (who could be a genius scientist or an artist).

Surgeons don't really give a shit about personality.  That's why they're surgeons, so they don't have to interact with patients.

[garbon]

Except that we lack the facts in this particular case and it may be that mental insufficiency as you've termed it only plays one small part in assessment.

That stops us from discussing it in general terms.... how?

Well if we don't have any specifics about what criteria is actually used to get on the transplant list - I don't see the point?