Autistic man denied heart transplant

[merithyn]

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.

[Martinus]

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.

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).

[alfred russel]

Presumably a heart isn't going to be thrown out rather than give it to this guy, so apparently there were at least two people hoping for that heart. Maybe they should have had them come in and do an interview before a panel of esteemed judges about why they should get to live, who would then decide who gets the heart. Perhaps it could be televised, with a portion of the advertising revenue going to organ donation awareness campaigns.

[garbon]

Presumably a heart isn't going to be thrown out rather than give it to this guy, so apparently there were at least two people hoping for that heart. Maybe they should have had them come in and do an interview before a panel of esteemed judges about why they should get to live, who would then decide who gets the heart. Perhaps it could be televised, with a portion of the advertising revenue going to organ donation awareness campaigns.

Indeed.

That said, I think the real issue is whether or not autism/other brain disorders should be reason to deny a transplant.

[Barrister]

Presumably a heart isn't going to be thrown out rather than give it to this guy, so apparently there were at least two people hoping for that heart. Maybe they should have had them come in and do an interview before a panel of esteemed judges about why they should get to live, who would then decide who gets the heart. Perhaps it could be televised, with a portion of the advertising revenue going to organ donation awareness campaigns.

Indeed.

That said, I think the real issue is whether or not autism/other brain disorders should be reason to deny a transplant.

I can imagine a scenario where reasons connected to his autism means he would have a poorer prognosis than someone else.  For example, "due to his autism he has a poor history of complying with medication, and he would need to be on a very lengthy series of medications after a transplant".

You don't make a moral judgment about a person.  You don't say one life is worth "more" than another.  You don't deny an alcoholic a liver transplant because alcoholics are bad people, but because they won't have a good outcome.

[garbon]

I can imagine a scenario where reasons connected to his autism means he would have a poorer prognosis than someone else.  For example, "due to his autism he has a poor history of complying with medication, and he would need to be on a very lengthy series of medications after a transplant".

You don't make a moral judgment about a person.  You don't say one life is worth "more" than another.  You don't deny an alcoholic a liver transplant because alcoholics are bad people, but because they won't have a good outcome.

Oh yeah, definitely agree across the board. However, if it is an individual who has a good history of compliance/consistent care & supervision then prognosis shouldn't be necessarily poor just because of autism.  That's why I'm wondering if there is a little more subjectivity around that versus chronic alcoholic and likely to destroy transplant liver.

[merithyn]

What I meant was that the argument given is that an autistic person may not be able to care for himself post-transplant. It's implied that this particular individual could. If their argument for denial is on something as subjective and variable as this, then the individual should be assessed rather than simply his diagnosis.

That said, I think the real issue is whether or not autism/other brain disorders should be reason to deny a transplant.

Then there's this.

I don't think that there's an easy answer.

[Admiral Yi]

How do you think the individual should be assessed Meri?

[merithyn]

How do you think the individual should be assessed Meri?

In this case, an assessment of self-care, though I would assume that was already included in the initial application. There's a lot information missing from the article, and I tend to assume that in this kind of situation the doctors would do due diligence before making this kind of decision.

Like I said, I see both sides and can't say that either is wrong. Based on the article, it seems like the doctors didn't really assess the man's ability and instead just denied him due to the autism, but that could just be the spin of the article.

[garbon]

Actually the rest of the article doesn't have much spin:

Penn Medicine was unable to comment on Paul's specific case, but said it reviews a number of factors before putting a patient on the transplant list.

...

Patients who are denied can seek evaluation for the national waiting list at another transplant center in the hopes that the new center has a different criterion for choosing transplant candidates. Once the patient is on the national list, the United Network for Organ Sharing, a non profit contracted by the federal government matches donor organs to recipients.

...

For now, Corby is accepting signatures on her Change.org petition and has mailed Paul's records to the Mayo Clinic for review. She also plans to send his records to the University of Pittsburgh's hospital.

"We don't want to get too hopeful, but it's better than where we were before," she said.

[Berkut]

I think in this case there are just some unknowns - like how steroid medications interact with autism medications.

[Darth Wagtaros]

Obama death panel in action?

[merithyn]

I think in this case there are just some unknowns - like how steroid medications interact with autism medications.

I didn't realize there were autism medications. So yeah, that would be an issue, too.

I can't see an easy answer to any of this. And I just couldn't imagine being on the panel that has to make these kinds of decisions.

[alfred russel]

Like I said, I see both sides and can't say that either is wrong. Based on the article, it seems like the doctors didn't really assess the man's ability and instead just denied him due to the autism, but that could just be the spin of the article.

What is very fustrating to me, is that in a situation like this the article doesn't attempt to get the other side. Obviously the doctors making the call can't speak due to patient confidentiality, but the reporter could seek to have that waived in this case by the family which presumably went to the press. Calling an autism advocacy group to get their response after reading another newspaper article isn't really hard hitting journalism.

[garbon]

I didn't realize there were autism medications. So yeah, that would be an issue, too.

All just look like standard drugs one takes for other conditions.

http://www.newsmax.com/FastFeatures/Drugs-medication-for-autism/2011/01/12/id/382640