Medical debate: Should autism block a man from getting a heart transplant?

15 Aug

Earlier this year a story came out about a child being denied a transplant due to developmental disability. Now we have a story of an autistic adult possibly being denied a heart transplant due to autism. In Medical debate: Should autism block a man from getting a heart transplant? we read:

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

How characterizing him as having a “flawed mind” is helping, at all, is a good topic for discussion on its own.

Mr. Corby’s mother has started a change.org petition:

My son Paul was denied placement on the heart transplant list because of his mental disability. The doctor was more interested in the fact that he could not name all his medications (he takes 19 at the present time) and the Princess Peach doll he carries for comfort, than the fact that he has never smoked or drank alcohol. Where will the discrimination end?

Paul is a wonderful boy that has taken his mental and physical illness in stride. He has just completed his first novel geared toward preteens. We are now in the process of having it self-published. This is really the only thing that keeps his mind off of his mortality. How do I explain to him why he can’t have a new heart?

Can you help us tell the Transplant Committee they are wrong and he deserves the chance to grow old and watch his two young nephews grow up?

The petition has over 11,000 signatures so far.

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By Matt Carey

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14 Responses to “Medical debate: Should autism block a man from getting a heart transplant?”

  1. Susie August 15, 2012 at 05:56 #

    How do the parents of 8 year old children explain that they won’t get a new heart? There just aren’t enough to go around. I think people should start demonizing non-organ donors rather than the doctors who are doing their best to save lives.

    • Sullivan August 15, 2012 at 06:49 #

      How do the parents of a young man with PDD-NOS tell him he won’t get a new heart?

      What if the parents had to tell the eight year old, “sorry, you don’t get a heart because you’re disabled”?

      No one is saying these are easy decisions for the doctors. I had a relative who worked as the contact person who would discuss the option of organ donation with next of kin in hospitals.

      What if I put a requirement that my donated organs could only be used for disabled people, and the parents of the 8 year old had to explain that to their kid?

      Not easy at all.

      • Chris August 15, 2012 at 07:31 #

        This is definitely not a black and white issue.

        I have an adult son with a developmental disability and heart condition, but neither are as severe as that young man. It is obvious that this young man’s parents make sure he takes all of his medication, my son is capable of taking his meds twice a day.

        Unfortunately a couple of years ago he decided himself he really did not have the heart disorder, and stopped taking them. That turned out quite badly, and we had multiple calls to emergency services. The first few calmed him down, and he was okay. Then the penultimate call ended up with him spending time in a hospital emergency depart, and the last call ended up with him spending three days in the hospital.

        Fortunately, there is a happy ending in that he agreed to surgery and things are better. And he is now very good about taking his
        meds.

        The meds required after a transplant are not trivial. Though I wonder if they are as much as what the young man takes now. My son’s medication initially increased, but are now back to what they were before. Perhaps the young man’s parents will still control his medications.

        This reminds of the stories I have heard about the <a href="http://www.slate.com/articles/health_and_science/medical_examiner/2008/06/the_god_committee.single.html&quot;, a group in Seattle that determined who was worthy of getting what was then very scarce kidney dialysis treatment. No, this is not an easy subject to discuss, as it leads to many ethical digressions. But I do agree that more people need to become organ donors.

        On a very bizarre side note, my son is now going to post-surgical cardiac rehab three times a week during the summer (and because he is under age 26, it is all covered by his dad’s employer’s health insurance,…. thanks ObamaCare!). During that time I sit in the lobby area waiting room where I can see everyone who comes and goes. The other day when I walked in the front door I noticed a county police officer in a medical clinic on the main floor. Okay, I thought, that was odd. As I prepared to leave I noticed that the police officer was also leaving with another county police officer as they escorted a man in orange coveralls who was shackled. It was now clear that they were taking a prisoner in for a medical appointment.

      • Chris August 15, 2012 at 07:32 #

        I mucked up the link to the article. Here it is:
        http://www.slate.com/articles/health_and_science/medical_examiner/2008/06/the_god_committee.single.html

  2. psychtld August 15, 2012 at 06:33 #

    Someone needs to go round and give the members of the Transplant Committee a good arse-kicking.

  3. Audrey August 15, 2012 at 14:23 #

    I read one of the articles about this case and it sounded like a key issue was how the patient was going to respond to steroids. Transplant patients need to take them for the rest of their lives and they can really magnify and disrupt emotions. I’ve seen MS patients who were a little blue who became acutely suicidal on steroids. If this young man has moderate problems with anxiety, agitation, etc., those problems could be severely exacerbated by medicines he would have to continue taking. So the new heart might get him 5-10 additional years of relative misery. And of course, in the end, all else being equal, people would still rather take the medicines and get the transplant. But there’s only so many hearts out there and if he gets a heart, then somebody else doesn’t. Or if this young man has some self-injurious behaviors that leave him open to infection, he may not get nearly as many years out of this heart as another candidate.

    If the transplant committee is dismissing him because he has some odd or immature behaviors, or because he’s diagnosed with an ASD, then that’s really awful, full stop, no argument. But transplantation is rationing. It has to be. So the decisions they make are complex and I’m hesitant to assume that straight-up prejudice or ignorance guided the committee’s decision without further information.

    • Sullivan August 16, 2012 at 03:09 #

      If the decision came down to whether he is capable of participating in the regimen isn’t then the responsibility of the developmental services department in his state to provide the support necessary?

  4. farmwifetwo August 15, 2012 at 15:16 #

    I know of someone that has had a heart transplant (40 ish) – his wife has been online for years in places I play and a year ago he became ill (pneumonia – that attacked his heart) and after becoming very ill (heart pump, infection, drug induced coma for 6 weeks) he’s got a new heart and doing amazing for someone that very nearly died. The rehab and drug regime are difficult for someone who is able to make appropriate decisions, let alone someone that has difficulty doing so. IMO, that should be a consideration – cruel, unfair etc… maybe, but it’s also realistic. If they have difficulty doing so prior to the transplant ( not eating properly, skipping meds, skipping exercises, appts etc), doing so after when you don’t feel well, when you don’t understand why you should, could actually do more harm than good to your long term outlook than not having the transplant at all.

    I also believe that should be a consideration for the non-disabled as well.

    • Sullivan August 15, 2012 at 15:43 #

      The mother addresses this point somewhat in the story. She notes that, in her view, the doctors weren’t interested in his ability to follow the regimen but instead focused on signs of disability.

  5. Center for Autism and Related Disorders August 15, 2012 at 18:05 #

    This committee puts themselves in a position where they are saying that one life is more valuable than the other. Who gave them this power. This is sad to see. The blind prejudice against someone because they are different.

  6. Susie August 16, 2012 at 02:31 #

    My brother has Down Syndrome. I understand these disabilities better than most. I’m just saying that it’s not easy for anyone to make such decisions. There must be a good reason why this man isn’t the best candidate. I also work in a doctors office and see what the physicians go through making life and death decisions EVERYDAY. It’s not as black and white as people think.

  7. Calli Arcale August 16, 2012 at 21:04 #

    I don’t think autism should be a consideration unless the child has no proper caregivers — though if the child has no proper caregivers, how would he/she ever get medical care and be identified as a transplant candidate in the first place? The questions need to be: is the patient a surgical candidate (i.e. can he/she survive the transplant procedure), will the transplant give good enough odds of survival (e.g. if the organ died due to an ongoing condition that will likely kill the new organ in a few months, this is probably not a good candidate), is the available organ compatible, and can he/she tolerate the anti-rejection drugs. Medical questions, not “value” questions.

    I think if we ask doctors to assess the value of the individual rather than just the bare medical details, we are asking too much of them. That’s a horrible place to put a person, making life or death decisions like that on something as subjective as a person’s worth to society. Once the “is he or isn’t he a candidate” question is answered, actually bestowing the organ upon them must be either first come first serve or completely random.

    “The terrible algebra of necessity.” I just got done reading “Snuff”, a Discworld novel. It touched on this several times, especially in discussing how goblin mothers, if they were starving, would eat their babies. Humans used this to show how horrible goblins were, but when it was explained from the *goblin* point of view it was very different. They didn’t like doing it, but they believed that if the baby was eaten by its mother, she would eventually give birth to it again; if she didn’t, it would die forever. The terrible algebra of necessity — there are times when you simply cannot save everyone and must consciously choose who will live and who will die. There are no good outcomes in those cases; just ones that hopefully aren’t as bad as others.

  8. lilady August 18, 2012 at 01:52 #

    (Anecdotal, but true story)

    Two weeks ago, my daughter was purchasing a rather expensive gift for her closest friend’s birthday. She was asked to confirm her identity, with her NYS driver’s license. The shop clerk asked her about the donor heart designation on her driver’s license:

    http://www.donorrecovery.org/learn/become-a-donor/

    My daughter explained that she was the recipient of an anterior cruciate ligament from an 11 year old child whose parents donated their daughter’s tissue upon her death. She also explained that when her brother died at age twenty eight, his corneas and his heart valves, were donated. (My son died in his sleep; consequently he was not on a respirator to perfuse his organs and ineligible for us to donate his major organs for transplantation). Two days later, the shop clerk called my daughter…she had completed an online donor form for the NYS Department of Motor Vehicle Licensing.

    If Paul Corby has no comorbidities that would preclude the post-transplant anti-rejection medication regimen…he should not be denied his chance at a long life…based on a developmental disability diagnosis.

  9. David N. Brown August 18, 2012 at 06:21 #

    I have to say, regardless of the merits of the cause, putting a petition up does NOT strike me as a constructive thing to do. It seems quite possible that it might only make the Transplant Committee more resistant. It also has to be said, that the Committee SHOULD be above the influence of pressure from a would-be recipient and representatives. If it were otherwise, the foreseeable end of the slippery slope would be effectively if not literally giving organs to the highest bidder.

    David N. Brown
    http://www.evilpossum.weebly.com
    http://www.autismandreligion.weebly.com

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