In
brief, her son 23-year old son Paul is autistic and he is so unwell that he is
in need of a heart transplant. The Corbys learned this in 2008, and Paul’s condition has been
serious for the past four years. In 2011 they
were told it was time for a heart transplant. That didn’t happen in
2011. The reason it did not happen has become the story. It may not happen at
all unless Karen can succeed in her cause.
Having heard that another woman gained a successful
outcome for her child by acquiring 50,000 signatures, Karen began this petition
process to ask the U of Pennsylvania to put her son on the transplant list.
This
story makes news because Paul has been turned down as a viable recipient
precisely because of his autism. It’s the Hospital of the University of Pennsylvania that refuses to put Paul Corby
on the transplant list -- because he's autistic. Well that is at least the way
it sounds and the way in which she is presenting it. Karen has written,
“My
son has faced discrimination because of his autism all his life, but this time,
that discrimination could kill him.”
His autism
renders him a questionable candidate for transplant surgery because the demand
for such a generous surgical procedure is so high and in the minds of those who
did the assessment, Paul’s autism presents numerous potential complications. He
cannot properly understand the procedure. He may become combative and
uncooperative. He may compromise the surgical work. Recovery and convalescence may
be jeopardized if he pulls out intravenous tubes and otherwise interferes with
the outcome. 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."
His heart condition is called left ventricular noncompaction. Paul has a left ventricle
that didn't close after he was born, so his heart doesn't pump the right amount
of blood. Medical professionals have said he requires a new heart in order to
survive.
Do
you think that should make the news? I do. Well so have other journalists with
a far wider audience. Good for them. But will it be enough? Paul's experience raises
questions about how autism and other brain disorders should be factored into
transplant decisions.
Paul is
diagnosed with Pervasive Developmental Disorder Not Otherwise Specified - is
high functioning and spends his days playing video games and writing the sequel
to his pre-teen, self-published novel, Isaac the Runner. He carried his
ever-present Princess Peach doll with him to his transplant evaluation. He
takes medicine for an unspecified mood disorder, his mother said. He has
shouted loudly enough that police have been called "three or four
times" to the family's home.
Does he
deserve to be placed on the waiting list for heart transplant procedures? Do you know anything more about this story? Do you have anything to say?
Medical
debate: Should autism block a man from getting a heart transplant?
The key lies in the proffered 'issues' being used to deny the target (the autistic: Paul). Specifically, issues conjured up sound so reasonable on first glance, but are at best, ambiguously worded. However, on closer scrutiny the issues are glibly sounding as hollow as a wooden leg, because they may be misleading.
ReplyDeleteFor example, we are told this person with his undesireable condition[autism], is being refused help for this heart problem because of " his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior." Sounds very official to the naked eye, the undiscerning eye.
More specifcally:
1)”his psychiatric issues,”: what are these Thought Process issues specifically and how would it affect the successful outcome of a Physical Surgical procedure? Please explain how a Thought Process issue directly affects the success of a Physical Surgical procedure. Also, it is irrelevant to be talking about speculative assumptions after the surgery as to what the patient might or might not do, as this would be pure speculation and likely biased without real facts and authentic justification.
2) “autism..”: put as a reason for denial of treatment, it makes this sound like autism is a hopeless disease that heart surgery will not cure .. “so why waste time and money”, as the blanket saying goes. However, what does a condition like autism, which is a brain-related condition, have to do with a mechanical heart-related condition.
It’s like saying the following: your car’s airconditioner is not working properly, so that is the reason we cannot work on your engine to replace your spark plugs, and you will just have to live with defective spark plugs because your airconditioning system is a problem and not functioning as expected.” Of course you can see the obvious: what does the airconditioner malfunction have to do with the engine sparkplugs? Obviously nothing.
3) “complexity of the process,multiple procedures”: since when is a heart surgery not complex and consist of multiple procedures? Outrageous that this is even put down as a ‘reason’ to deny treatment. Hey, why not let us use this reason to deny treatment to all other cases that have treatment processes that are complex and that have multiple procedures? Won’t that save us a lot of trouble, and valuable resources, to be used for treatment on only the deserving members of society? (continued..)
4) “and the unknown and unpredictable effect of steroids on behavior.”: is it really true that steroids have never been used on people like Paul because of his autism? So stearoids have never been given to autistic people? And there is nothing to counteract side-effects if there is really an adverse effect on behavior? And there is no alternatives to use of steroids? This is all sounding more than fishy.
ReplyDeleteWhat puts this over the top for me is the following:
“.. He (Paul) may compromise the surgical work. Recovery and convalescence may be jeopardized if he pulls out intravenous tubes and otherwise interferes with the outcome”.
I have worked in emergency rooms and ICU’s (Intensive Care Unit). People regularly tend to pull out their tubes and otherwise interfere with the outcome because it is uncomfortable, and foreign to them to have tubes stuck in their various orifices or needles inserted into their skin where there were no holes in the first place. And this is with normal adult people who may be a bit groggy or disoriented. Babies and kids try to pull out their tubes all the time. So are there ways to deal with this? Of course there are. There are preventative measures available so that they can’t do this. Why isn’t this mentioned? Why is this clever tube story proffered as an excuse for denial of treatment, a life-saving treatment in particular?
In the face of this, I can’t help wondering if there is another reason for this smooth-sounding but illogical set of reasons for denying lifesaving treatment for Paul the autistic child so that he can survive and live out the rest of his valuable life.
Or is this more about just not helping someone with an undesireable trait (ie.autism here) to survive. On the basis of these shameful shoddy excuses for denial of life-saving treatment, it is looking more to me like it could be that autism is simply being viewed by the decision-makers to be not a desireable trait (perhaps under the questionable presumption of helping only the fittest to survive, based on the principle of Survival of the Fittest?)
It is another way to say, why bother to use up valuable time and public resources for a non-contributing member of society.
ReplyDeleteThen the real core issue is revealed: from the question of just 'what' is considered to be 'contributing' 'to society', to a heart of the matter.. the question of just 'what' is considered to be 'valuable' ... 'to society'.
ReplyDeleteThen the question arises: just who will be 'qualified', shall I daresay 'wise' enough to make that determination, and the whole case will boil down to defining just who can make such a decision, and who is the owner of 'life in general'. Only two answers will result, both from different worldviews. Owner of life is oneself, or owner of life is not oneself. And one answer will end up in self-contradiction and horrible unavoidable disaster, while one answer will not.
The thing that really astounds me as one who studied genetics at the university research level, is that autism is not a genetic thing. In other words, autism is not likely 'caused' by genetically-defective parents. And so, autism cannot be 'passed on' to future generations. (Autism is a brain condition, a brain-development problem, that is usually caused by damage AFTER birth, during the development of the infant brain, likely through excessive levels of multiple concurrent doses of 'environmental' disruptors/invaders, such as 'harmless' adjuvants in vaccines..but that is another story).
ReplyDeleteWhat this means is that the genes (and the information contained in the genes) of the autistic child are probably quite normal, and that means that the children of autistic people can very much be normal.
Again, remember that Autistism is NOT genetically transferable, ie cannot be 'passed on' or 'inherited'.
So an autistic person can have a lineage of descendants who are quite normal genetically speaking. Letting Paul die prematurely would deny him this potential lineage. Unless of course, if someone wants to stop potential descendants from populating the world..
And again, that is another story..
Perhaps an illustration to clarify the above: "Again, remember that Autistism is NOT genetically transferable, ie cannot be 'passed on' or 'inherited'."
ReplyDelete...in other words, just as a broken bone in your arm, damaged AFTER birth during the development of the arm, is not genetically transferable, ie cannot be 'passed on' or 'inherited'.