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Health
Paul Corby Denied Heart Transplant Because He is Autistic
Karen Corby, a Pennsylvania woman, says that her autistic adult son, Paul Corby, was turned down for a heart transplant by the Hospital of the University of Pennsylvania last year because of "psychiatric issues" and "autism," reports the NY Daily News.
When she got the decision, Karen Corby told ABC News: “I was numb at first."
Paul Corby was originally recommended for the transplant by his doctor because he was born with a heart disorder which makes it difficult to pump blood through his body.
He was diagnosed with the ailment in 2008 and referred to Penn Medicine in 2011 for a transplant.
However, in a letter, dated June 13, 2011, Dr. Susan Brozena of Penn Medicine, wrote: "I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."
In a statement, Karen Corby said: "He just needs a fighting chance and the same rights to medical care as others his age. Autism is not a terminal disease and we cannot allow it to become one."
Karen Corby has started her own Change.org petition to get Paul's heart transplant and and has mailed Paul's records to the Mayo Clinic and to the University of Pittsburgh's hospital.
She told the Associated Press: "There has been a huge outpouring of support from Autism groups all over the country. I would not have found the strength to continue fighting had it not been for them."
University of Pennsylvania Health System said in a statement that "when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed."
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Comments
How are autism or
How are autism or "psychiatric issues" relevant considerations? Are either of these factors predicted to diminish the likelihood of a heart transplant procedure being successful? That is surely the relevant criterion, along with the risks of not operating, and the comparative quality of life before and after the operation.
On the face of it, the decision, to the extent that it based in part on autism and psychiatric issues, would appear to be irrational, or an unjustifiable discrimination.
Long term survival for a
Long term survival for a transplant patient means complying with medical treatment after the surgery. People with psychiatric conditions, including autism, are less likely to be compliant.
That's a crock of shit.
That's a crock of shit. People with "psychiatric conditions" are no more likely to be non compliant than anyone else. Sounds like you are the victim of bigoted attitudes regarding people who are "different". Where is your evidence?
I worked in mental health all
I worked in mental health all the way through my undergraduate and part of my graduate work. I worked in hospitals, group homes, and a crisis center. I witnessed the difficulty in getting people with mental health issues to comply with basic medical treatment such as diabetes, psychotropics, birth control, etc.
This individual is more than just "different." He walks around with a stuffed animal, takes serious meds for behavioral issues, and could never live on his own.
@CRW Is there a study that
@CRW
Is there a study that corrects for any increased likelihood that somebody with a psychiatric diagnosis will be prescribed medication that he or she, or anybody for that matter, would find unpleasant, or even harmful, and certainly not in the least beneficial? The anecdotal evidence I bring to this is having met, over the years, many many people who are prescribed psychiatric medication who simply decide not to take that medication for exactly these reasons, and nobody at all who fails to "comply" with such medication simply because they are more forgetful than other people.
For a few weeks during 2003, I was prescribed medication by a psychiatrist myself, that my then wife (who passed away in 2006) insisted I stopped taking, because she wanted back the husband she'd married. I was getting close to the point anyway at which I'd have abandoned the unsuccessful experiment of my own accord, but it is fair to say that I was very slightly slower to realise how much harm the psychiatrist's drugs were doing me than my wife was. In contrast, after having a triple coronary artery bypass graft, I have been extraordinarily keen to comply precisely with the prescription I now have, for life I dare say, for four different medications prescribed in order to reduce the likelihood of another myocardial infarction like the one got me carted off to hospital in an ambulance for the first time in my life.
@JA Psychotropics in
@JA Psychotropics in particular can have severe side effects, and whether someone should take them or not depends on the severity of their symptoms and the side effects. For some people with schizophrenia and other forms of psychosis, it is either take the meds or live in isolation. For people with bipolar disorder, Lithium can do amazing things, but it comes with side effects as well. For some people with severe depression, they cannot function without meds. However, I do believe medicine is over-prescribed to deal with temporary or situation based stress. This being said, people should talk to their doctors and therapists before making any decisions. I was never a licensed psychologist, and I don't want to give any impression that I am doing anything other than sharing my experiences and opinions.
Again, the issue with this individual is the severity of his psychiatric issues. He walks around with a stuffed animal, takes strong medicines to control his behavior, and he will never live independently. There are many people with things like mood disorders, moderate depression, etc., who can be fully functioning people without medicine and who would comply with transplant follow-up care. However, this individual could never do so by himself.
The root of the compliance problem is that in the 1970s there was a big and necessary shift in mental health treatment modalities and grounds for commitment. The play, "A Street Car Named Desire" exemplifies the abuses of the commitment process prior to this shift. In almost every state across the country, treatment cannot be legally required unless an individual is an immediate threat to himself, others, or property. Consequently, there are many people who could live much better lives with some supervision and intervention, but legally this cannot be forced in most situations. Consequently, this individual could likely stop complying with treatment, and there would be no way to force him to "do the right thing."
I am sure there is no comparison between whatever issues you have experienced and this man.
Thank you for taking the
Thank you for taking the trouble to write such a long reply, but it doesn't really address my question, in my first sentence. I asked, "Is there a study that corrects for any increased likelihood that somebody with a psychiatric diagnosis will be prescribed medication that he or she, or anybody for that matter, would find unpleasant, or even harmful, and certainly not in the least beneficial?"
What's all this about a stuffed animal?
Google the individual
Google the individual discussed in this post. I found articles describing him in detail. He walks around with a Princess Peach doll at all times.
No study is necessary to confirm what people who work in mental health already know. Compliance is a problem with people with moderate to severe mental health issues. However, there are literally hundreds of articles describing this problem. You could google it as easily as I could :-)
Social Security Disability is
Social Security Disability is going to run dry in 2016. Run dry means NO MORE MONEY. Gone. Vanished. We keep on wasting it. http://www.washingtonpost.com/politics/social-security-disability-trust-fund-projected-to-run-out-of-cash-by-2016/2012/05/30/gJQA3AfH1U_story.html
How is that relevant? Do you
How is that relevant? Do you have information about the patient, that isn't mentioned in the article here on Opposing Views?
For example have your read elsewhere that he claims Social Security Disability now, for health problems that the transplant surgery would cure, taking him off Social Security Disability? That would be a good economic reason for favouring this 23 year-old non-worker, over others who needed transplants from a limited supply of donated organs.
An economic reason for favouring other candidates for transplant of the next new donated heart over this candidate, would be provided if the facts were that he presently was receiving Social Security Disability (which seems likely, if he's awaiting a heart transplant), that he'd probably die soon without the treatment (ending his claim for Social Security Disability), and that he would be likely to need Social Security Disability payments for the rest of his life for reasons other than his heart problems if his life was saved. But we don't know all that either, and have no basis on which to make such guesses.
Because we don't know the facts needed to support an economic argument either way, the "NO MORE MONEY" article you linked to doesn't help us form an opinion about the decision.
In any case, the hospital isn't defending its decision by claiming to be taking economic considerations into account, as I have suggested how it could, if it knew certain facts that we haven't been told. But why should the hospital be expected to take economic considerations into account at all? It's not considered ethical to do so. The decision is difficult enough just when it has to be based only upon medical considerations. And I, for one, remain suspicious that even if the right decision was made in this case, at least two of the listed factors considered (autism and mental health issues) that were mentioned when the decision was communicated, are not relevant to the decision in any obvious way, so the decision, right or wrong, looks to me as though it might have been taken for invalid reasons, medically-speaking.
Paul Corby is mentally
Paul Corby is mentally disabled. The man walks around with a stuffed animal, lives with mother, and requires the equivalent of "chemical restraints" to control his behavior. He is not like the autistic boy down the street who is otherwise mainstreamed in public school.
His condition is genetic. His father died at 27 from the same disorder. Consequently, he should never have children even if he were to marry, which is unlikely even if he survives.
I agree that economics should never ever be a factor. This is also why I would like to see more government oversight. However, when you have one heart and multiple recipients, picking anyone means someone else will die.
I am sure that if this man were a prisoner in for life, no one would even think twice. We make these choices all the time. What is the line when it is no longer acceptable to do so?
There have been several bad decisions made for celebrities such as Mickey Mantle and David Cross. Consequently, we need consistency and pragmatism inserted into the transplant selection process. Whoever is next in line should NOT be a deciding factor nor should whoever has the best insurance or biggest bank account.
@CRW You seem to have
@CRW
You seem to have information that those of us who have only the Opposing Views article to go on lack. The most significant item of information suggested in your posting appears to be that Mr Corby suffers from a condition that gives him a reduced life-expectancy, even if he gets a donated heart. If this is true, that is a valid reason for giving the next heart to somebody else. But that would be a different story from the one on Opposing Views, where autism and mental health issues are cited.
I offered my opinion that was based ONLY upon the information in the Opposing Views article.
Even if you are basing your
Even if you are basing your decision only on what's in the article here this is a clear case. If the Dr doesn't think this patient is likely to be able to take his anti-rejection drugs on the extremely strict schedule that is required for the rest of his life then the Dr will advise that the heart go to someone who can. If he's not able to remember to take his drugs then the heart will be useless to him.
You and I don't know how serious his autism is but the Dr does. The Dr clearly decided that this was not a good use of a heart .
Not all doctors are
Not all doctors are authorities on Autism. Many still have unfounded beliefs about it, just like everyone else. If the doctor in question is not the physician treating his Autism, he may have no real idea what Mr. Corby is capable of.
I suppose it's possible that
I suppose it's possible that the mother was taking her autistic kid to a Dr who didn't understand his autism but I think it's unlikely. You and I don't know this guy and don't know the severity of his condition but I think the Dr likely has a pretty good idea.
Here's my question to you. You seem to think our current system to distribute organs, an insanely limited resource. Please propose a system that's more fair. I would love to hear how you propose a better system than our current one.
Google is your friend. I
Google is your friend. I knew there had to be more to this than the title of the posting.
Limited resources must be
Limited resources must be allocated and hard decisions must be made. I'm positive a father of 5 would go in front of a single man. Is it fair? I'd say no if I was the single guy.
If the father of five had a
If the father of five had a better chance of success after surgery, he would get the organ. If he was going to die anyway, and teh single man was more likely to survive, they would give(sell) it to the single man.
It's so reassuring to know
It's so reassuring to know that Penn thinks it can be the arbiter of who lives and who dies and who's worthy and who isn't. I guess all of us who are disabled better prepare, it sounds like this is the beginning of a attitude shift making us disposible. Especially among the top one percent, which include those who sit on Penn's Board of Governors. Only the super-rich get to live, unless they take a shine to you, and favor you with life.
Obviously, I'm being sarcastic in the extreme.
I have never heard anything so horrible in my life. The transplant list is the vehicle that determines who gets hearts first, based on all the variables. You don't refuse to put someone on the list just because they're disabled, you prioritize them on the list based on best potential matches, favorable outcomes, and of course, order in which they become eligible.
Oh, and by the way, I don't actually think of autism as a disability. It's another way of being human. As for the psychiatric issues, that is just out-and-out discrimination and it's disgusting.
How can you think autism
How can you think autism isn't a disability? Does it reduce your ability to do things? Yes? Then it's a disability. Autism clearly reduces your ability to do many things. Including taking your medication.
I get that this is a very sad case and I feel sorry for the mother but there's an extremely limited supply of organs since so few people are organ donors. On top of that, relatively few people die in a way that's conducive to organ donation leaving supply extremely limited.
If you have 1 heart and 50 people who need hearts how would you decide who gets it. Keep in mind that any decision you make will lead to 49 of those people dying of heart failure. How do you make the decision?
There are a number of factors in the decision but one is long term survivability. When you get an organ you're going to be taking anti-rejection drugs for the rest of your life. If a Dr doesn't think the patient will be able to follow this strict medical schedule they're unlikely to get an organ. Someone with severe autism is unlikely to be able to follow that strict medical schedule.
If you think autistics are
If you think autistics are not disabled, then you have never worked with them. Mild autism is effectively a social impairment. This is what people think when they think autism. These are not the kids terrorizing their parents and siblings who are lucky if they ever become verbal. I worked in group homes and long term care facilities when I was an undergraduate. You have no idea what you are talking about.
Google Paul Corby. He is not just mildly autistic.
But it's okay when David
But it's okay when David Crosby gets a liver after he destroyed his by drinking?
No... he shouldn't. The same
No... he shouldn't. The same thing happened with Mickey Mantle. There needs to be more regulation of who gets organs. It cannot be driven by money or fame. If you have a cirrhotic liver caused by substance abuse, you should go to the bottom of the list no matter who you are.
David Crosby PAID for his
David Crosby PAID for his liver transplant and NOT with public funds which are rapidly running DRY. Social Security Disability is going to run dry in 2016. http://www.washingtonpost.com/politics/social-security-disability-trust-fund-projected-to-run-out-of-cash-by-2016/2012/05/30/gJQA3AfH1U_story.html
It doesn't matter how much he
It doesn't matter how much he paid. Organs are a limited resource and are not supposed to be available to the highest bidder. It was wrong that he was able to pay his way to a new organ.
David Crosby got a liver that
David Crosby got a liver that could have went to someone who had taken good care of their body, not someone who was fortunate enough to have a healthy body and destroyed it with drugs and alcohol. It's not about the money, it's about the kidney. I guess those with money are more entitled because they can pay?
There are many degrees of
There are many degrees of autism. Is he institutionalized, or just weird like me?
He's neither
He's neither institutionalised, nor (probably) weird like you. He's weird like him, judging by the synopsis of his first novel.
You can buy his first novel for $6.95 via http://www.yourbook.com/BookInfo/IP43356-12.asp
The synopsis at the end of that link reads: "Four teens with superhuman abilities embark on mystical adventure to recover stolen candy from a diabolical Robot enemy. They encounter strange creatures in odd places to become city heroes."
He's presently working on his second novel.
Everybody who dies other than from heart failure is potentially a donor of a working heart. I imagine that the shortage of hearts is therefore caused by delays obtaining consent to harvest organs, or in accessing a computerised records of consent already given by deceased potential donors whilst they were still alive, coupled with logistics problems getting donated heart and waiting-list recipients together once good matches are identified, plus the public simply not agreeing often enough to become donors of organs after their deaths.
I am fairly sure that I've always ticked the boxes for any of my organs to be used after my death. I doubt any of my organs will be used though. I expect them all to have become unusable by the time the doctors discover that they could have used them, if only they'd known sooner that I have said countless times they could.
Actually harvesting usable
Actually harvesting usable organs like the heart is harder than you think. The donor has to still be alive when the heart is harvested. Young people who are killed in car accidents often have suffered so much trauma that their heart is unusable. According to this article, a heart must be used within 30 minutes of "death":
http://www.ncbi.nlm.nih.gov/pubmed/1570968
A good friend of ours is a thoracic surgeon, and he claims the pool of patients is always larger than the pool of usable hearts.
" I expect them all to have
" I expect them all to have become unusable by the time the doctors discover that they could have used them, if only they'd known sooner that I have said countless times they could."
Which is why you should tell them as you lie in the hospital (if you can). And make sure your next of kin will carry out your wishes. They get the final word in the US.
Very good question.... I
Very good question.... I would hope he was a severe autistic if they made this decision based on the patient's autism.
http://www.change.org/petitio
http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant I would be very careful about asking for more organ donors given the situation Penn Medical is in. Tread lightly!!!! I, myself, am an organ donor, but am seriously re-thinking this decision right now. If an individual cannot trust that those MD's are not making discriminatory decisions when placing organs to deserving patients, then they will be MUCH LESS likely to register as an organ donor!!! I would gladly give MY HEART to Paul!!!
It's not the MD's making the
It's not the MD's making the decisions, it is the hospital administrators, organ auctioning companies, and other bureaucrats. The MD's just do the cutting where they are told.
No, it's none of them making
No, it's none of them making the decision. The rules are set, and strictly enforced in most cases, by the national organ registry. The Dr makes a recommendation based on their rules.
If you want to help more people get organs then get more people signed up to donate organs.
The "drama" around this story
The "drama" around this story ignores the fact that many people die on the transplant waiting list while waiting for a usable heart. Prioritization is based on likely outcomes. Transplants are the one are of medicine where rationing is not only acceptable, but necessary. If the resources required were not limited, I would share everyone's outrage. However, with hearts, the pool is very limited.
I feel for the parents of this young man. However, would it make sense to expend an organ on him or a married father with a very good chance of survival? It is the crassest form of comparison when it comes to medical treatment, but it is a reality given the limited number of donor organs.
Sympathy should not drive a decision like this. Likely positive outcomes and impact on others should be the only factors driving the decision of who gets a heart.
"Prioritization is based on
"Prioritization is based on likely outcomes"
That is total bull. Priority is based on financial status. If the hospital cant see a way to make money on the transplant it wont happen.
This is why we also need more
This is why we also need more government oversight to ensure the process is fair. People like Mickey Mantle never should have been approved for a liver transplant.
In this we agree that money and ability to pay should never be a factor.
y'know... I hate to admit it,
y'know... I hate to admit it, but I think you're right. It does rather disgust me, admittedly.
How dare you compare Paul
How dare you compare Paul Corby to a "married father"! Insinuating that his life is less valuable, he is only 23...he needs to be given the chance to get married first!!!
I did a little more research.
I did a little more research. Paul Corby has a genetic congenital condition that also killed his father at 27. He should never have children, if this is a factor for you.
He is disabled and can never live on his own. He walks around with a stuffed animal and takes medication to control his behavior. Chances are he would never marry, have children or hold down a job.
Yes... I think the life of a married working father is worth more. If we had one heart and two patients, I believe conditions like this matter. If it was just money, that should never matter. However, it is making a decision over who lives and who dies.
Actually, if it is spending
Actually, if it is spending millions and a precious resource on a productive member of society and a prisoner, I bet you wouldn't hesitate. When the resources are truly limited, we need to make these choices. When a resource is practically unlimited, then it shouldn't matter. Until we can grow hearts in labs, tough choices have to be made. Developing a queue with no prioritization is unfair to everyone.
We need more government oversight. Celebrities who have cirrhotic livers due to decades of abuse should go to the bottom of the list of people who can get livers, no matter how much money they have. People who smoke and drink or abuse other substances should be given lowest priority for any organ transplant.
Organs are limited and random selection or money should not be the deciding factors. We do need to make these tough comparisons.
You said in an earlier post
You said in an earlier post that this would make you reconsider being an organ donor but that would only compound the problem. As CRW stated, these decisions are made based on a number of factors but one of the biggest is likely survivability. Forget the "married father" example because that's not one of the categories they make these decisions on.
If you have a single heart and a hundred people who need hearts how do you make the decision who gets it? One of the biggest factors they decide on is the likelyhood that this heart will save the persons life and they will get many years of use out of it. That requires good general health aside from the heart but it also requires that person will take myrad drugs on a regular schedule or the body will reject the heart.
You and I don't know this guy, we have no idea how serious his autism is but the Dr does. Maybe that Dr knows that his autism is severe enough that he can't be counted on to take those drugs on a regular basis. Maybe his mother will help now but his mother won't live forever. Do you give this heart to a guy who will get a few good years out of it and stop taking his meds or do you give it to someone with full mental capacity who understands and is able to follow that strict schedule?
This has nothing to do with the worthiness of his life. It has everything to do with how many years this heart will give someone. If you want to help patients like this then encourage more people to be organ donors. The more available organs there are the fewer people will have to die on the waiting list.
"How many years this heart
"How many years this heart will give someone"? Just answer me this, WHO determines how many years??? Does Dick Cheney have a lifetime to live with this new heart of his? And why was 4 year old Amelia, whoes parents are in their 20's (mind you) denied placement? My point is that I feel your points would be much more valuable if you actually had statistics to back up your statements. I personally no longer have faith in the medical community making these decisions, and that is saying alot because I am a part of it. To deny this human a life-saving procedure soley based on the idea of future non-compliancy, ridiculous!
The Dr's determine how many
The Dr's determine how many years!
Dick Cheney shouldn't even get healthcare, much less a new heart!
I don't know anything about "Amelia" or her parents so I have no idea why she was denied. There are many reasons. Are you sure she was denied or did she just die waiting like the vast majority of people on the waiting list do? I do have both friends and family who have died on the waiting list.
"To deny this human a life-saving procedure soley based on the idea of future non-compliancy, ridiculous!" Why? If he has to take a drug twice a day to keep his body from attacking the heart and killing him and the heart then why on earth would we not take into account his likely hood of taking those meds on that schedule?
Please tell me how you would allocate organs? I would love to hear some real detail on how you think you could allocate this extremely limited resource more fairly than the current system.
Simply stated: Anyone who is
Simply stated: Anyone who is deemed medically necessary to survive. Everyone should be given equal opportunity, regardless of cognitive status, background, psychosocial components, financial status...regardless!!! If they die on the waiting list, or die after transplant...well those decisions are left for for our higher power (as they should be)! It is thought of another human deciding someone's right to live or die that is barbaric, in my opinion. In a perfect world, everyone would be an organ donor.
"Everyone should be given
"Everyone should be given equal opportunity, regardless of cognitive status, background" So, we just dole out organs randomly? What if a person is spending life in prison? Based on your suggestion they're as likely to get an organ as you are. What if a person has a terminal condition and likely has 6-12 months to live? Are we going to give them a new heart? How about a patient in a coma? Would you be OK with them getting a heart before your healthy child?
There are about 115,000 people in this country waiting on organs and far fewer organs than that available. Do you really believe random distribution is the most equitable way of doing this? These decisions aren't left to a higher power. Dr's make life and death decisions every day. If your higher power wants to help, he should convince more of his followers to become organ donors so we don't have such a shortage.
No one can be deemed
No one can be deemed medically necessary to survive. If they could, then I bet every politician, millionaire, transplant surgeon, everyone but us "regular people" would be on the list.
"...well those decisions are left for for our higher power (as they should be)! It is thought of another human deciding someone's right to live or die that is barbaric, in my opinion. In a perfect world, everyone would be an organ donor."
Or no one, if we left it all to the higher power.
You're right EVERYONE or
You're right EVERYONE or NO-ONE
There is no way we will ever
There is no way we will ever have organs for everyone who needs them. Even if everyone was an organ donor the chances that there's an organ of the exact type needed, within range that it could get to anybody, at any given moment is virtually nil.
In reality we need to increase the number of people donating organs to minimize the number of people who die waiting. What you're suggesting is guaranteed death for hundreds of thousands of people rather than saving as many as we can.
He was stating his case as
He was stating his case as fact. Maybe he's involved with the business somehow. It's sad that they may ration them out, but it's one of those things that could need careful monitoring.