Autistic Man Denied Heart Transplant at UPenn Hospital

Discussion in 'Politics, Religion, Social Issues' started by bradl, Aug 15, 2012.

  1. bradl macrumors 68040

    bradl

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    #1
    This really isn't an Affordable HealthCare Act issue, nor an insurance company issue (yet). This is more about the safety and well-being of a person (read: Hippocratic Oath) versus a modern-day label placed on the person. I don't even know where to start with this, but think that it's wrong all around. I'm at a loss for comment, so I'll think of something to say later. For now, read and discuss.

    Autism Transplant Denial Sparks Debate

    BL.
     
  2. AhmedFaisal Guest

    #2
    I see nothing wrong with the decision per se. Do I feel for the family, yes, but I essence I agree with the decision.
     
  3. niuniu macrumors 68020

    niuniu

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    #3
    What's the consequence of him not getting a transplant? Death, or does he just have to undergo other types of treatment or surgery?
     
  4. mcrain, Aug 15, 2012
    Last edited: Aug 15, 2012

    mcrain macrumors 68000

    mcrain

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    #4
    If in the midst of tragedy I signed the paperwork so that my loved one's organs could be used to save someone else's life, I would be very disappointed, angry even, if that gift was given to someone who didn't have a family, a life, responsibilities, and/or a future or who like Dick Cheney had already had a long life (age).

    The doctor's probably had to consider the fact that for the rest of the patient's life they would have to adhere to very strict medication and lifestyle restrictions, and how can you ask, expect or even believe someone of limited capacity would be able to do so. Obviously, that would depend on the degree of autism, but while I feel for the parents, I'd have to defer to the doctor's decision. S/he is after all, the expert. (Kind of like a teacher who works regularly with autistic children).
     
  5. bradl thread starter macrumors 68040

    bradl

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    #5
    That's a really good question. But to mix oaths with Star Trek, one section of the Hippocratic Oath states:

    Per Wikipedia, Therapeutic nihilism is the contention that curing people, or societies, of their ills by treatment is impossible.

    But in this case, opposite of Spock, the needs of the many are outweighing the needs of the one (sic). The decision to deny this because of autism goes completely against what they've sworn to do as doctors/physicians. They do state that one of their dangers is that someone with a mental disorder could need to be restrained during surgery or harm themselves in recovery, but that is so case-by-case that they can't accurately state that such a situation would happen here.

    The issue that I see coming up is would their denial of the transplant run the doctors foul of the oath they swore to when they became doctors?

    BL.
     
  6. niuniu macrumors 68020

    niuniu

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    #6
    If you're being a purist then yes the kid should have been put on the transplant list. The doctor is coming from a type of utilitarianism which is probably regularly at odds with his hypocratic oath.

    To test the doctor better you might have to rush the autistic kid to ER and see if he would grant the transplant then to save his life.
     
  7. AhmedFaisal Guest

    #7
    The short answer is no. If there were an abundance of organs, you would have a ground to stand on. However there is not. As such there are medical guidelines that provide guidance as to who is more or less worthy of receiving an organ donation. These are based on the concept of maximizing the benefit of the scarce resource that are organ donations. These guidelines also include clear exclusion criteria by which certain individuals are not even admitted to the waiting list based on what is current medical consensus in regards to insurmountable challenges to a successful transplantation. Are these criteria necessarily broad and often do not account for individual circumstances. Yes, but there is no better way of doing this without creating a tremendous bureacracy that has risks of inequality and unfairness in and of itself. If the family and advocates for autistic individuals feel the current guidelines unfairly exclude them from donor lists, they should challenge the medical community to change the guidelines. Until then however, the decision makers have to follow the guidelines that are in place. In my mind, a doctor that goes against the guidelines violates his oath as he operates outside of what is considered good medical practice.
     
  8. Ugg macrumors 68000

    Ugg

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    #8
    The oath is not the issue. The lack of donor organs is.
     
  9. bradl thread starter macrumors 68040

    bradl

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    #9
    Keep in mind that without knowing the full details of the story, it looks like the patient wasn't denied the actual organ; he was denied being put on the list for transplant. This doesn't mean he will actually get the organ he needs, but not even being able to be listed hurts even more.

    With a little under 12,000 transplants being done out of the 115,000 people on the list, there is little chance he will get the organ needed immediately.

    Therein lies the problem. Do the guidelines and the subsequently created bureaucracy conflict with the oath in this situation? It's a tough question to answer, but should be talked about. I know we have lawyers in this forum, but any doctors want to chip in?

    See the above. in fact, I'll give you another analogy. I have homeowners insurance in my state (required for owning a home). I had 5 claims within a 5 year period against my insurance:

    1. 700ft. of fence falling down from a storm,
    2. ceiling falling down due to an A/C unit that was recalled,
    3. car broken into (damages were less than deductible, but claim had to be opened),
    4. burglarized, and
    5. car crashed through my yard and into my neighbour's house.
    While all of these were important, and the fact that I had been with this insurance company for 20+ years, it was their 'guidelines' that stated that I had too many claims in a short period of time, and they dropped my insurance policies. When I needed them most, they decided that it was too much of a risk and left me high and dry, after resolving the claims.

    Like the person needing the transplant, should guidelines and bureaucracy get in the way of when someone needs the help that a doctor, physician, or in my case, insurance company can provide, especially when paying into it?

    BL.
     
  10. NickZac macrumors 68000

    NickZac

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    #10
    Would you see something wrong with denying someone who is poor the transplant because they could probably not afford the aftercare?

    How about denying a former drug addict because they may nuke their heart with a relapse?

    What about someone who is overweight? They couldn't possibly care about their health given their physical condition...

    What about someone who is a certain race because the board (wrongly) feels they are more prone to crime and so their life has less value?

    This furthers my point that people with disabilities are continually discriminated against, and most people don't care. So the life of someone with autism is worth less then someone without. Wow. That is upsetting to my (disabled) self.
     
  11. niuniu macrumors 68020

    niuniu

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    #11
  12. AhmedFaisal Guest

    #12
    Doesn't matter. If he meets one of the exclusion criteria then he shouldn't even be on the list, no matter how slim the chance.

    The oath does not require you to treat regardless. The oath requires you to base your treatment decision on what is considered good medical practice. This can sometimes also mean to withhold treatment. So, because good medical practice means "follow the transplant guidelines", there is no violation of the oath.

    I will not go into the previous analogy because explaining why it doesn't work in this circumstance takes to long...

    The system exists to provide the most fair access to a scare resource, fair meaning based on criteria outside of your economic capabilities, you get more of less of a chance to receive a transplant. These criteria are transparent to all and they are not made willfully but by careful deliberation by the expert community based on current best available knowledge. They are subject to challenge when better knowledge arises but until it does, the system needs to continue. To remain fair, the system MUST NOT allow exceptions otherwise you create a slippery slope and risk losing organs as individuals sue to get exceptions granted to either get admitted to the list or receive a higher score.
     
  13. AhmedFaisal Guest

    #13
    Yes, and to my knowledge the transplant guidelines esplicitly exclude economic considerations.


    They do receive a lower score for the waitlist and I believe that is justified. It also depends on how long you are a recovering addict. And again, that in my mind is justified.


    Being morbidly obese or an uncontrolled diabetic gets you a lower score. And I have no problem with that.

    As this can't be tied back to the individual, it shouldn't and isn't part of the considerations. So yes, I would very much disagree with such a decision.

    It depends if said disability represents a challenge to the treatment success. Is excluding autism per se the right thing to do, probably not, but I am no medical expert in transplant medicine. If it is then I would leave it to the experts in both the guideline committees and those representing autistic people to determine how and to what degree the guidelines must change. Who should be admitted to the waitlist and how should degree of autism affect the score. Until then however I expect the doctors who have to decide whom to admit to the waitlist to base their decision on what the guidelines currently require.

    I highly doubt that he was at the top of the list, he probably just was lucky that due to a combination of circumstances his number came up. Do I believe that certain lifestyle choices should affect your level of coverage you receive and what services are available to you, in principle yes, however I concede that to implement such a system will be very challenging and will require a robust public debate and consensus.
     
  14. mcrain macrumors 68000

    mcrain

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    #14
    (snip) Ahmed basically said the same thing I did, but faster.
     
  15. Ugg macrumors 68000

    Ugg

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    #15
    Each are considered disabilities but when disabilities lower the success rate of a transplant, they should definitely be taken into consideration.

    Exactly. The rules or guidelines haven't been arrived at arbitrarily .
     
  16. bradl thread starter macrumors 68040

    bradl

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    #16
    The then again, the problem is that the system makes this all exclusive, not all INCLUSIVE. Since some of the exceptions are excluding some legitimate people out from the transplants they need to live, the system is being skewed. Good case in point: with all things being equal, should Jobs have asked to be added onto the list, then receive his liver transplant so quickly?

    Even more so, by what you are reckoning for all of this to be put right for the patient, a cure for autism would need to be found and applied to him *before* he could be added to the list for a heart transplant. would you say so?

    Honestly, think long and hard on that one.

    BL.
     
  17. mcrain macrumors 68000

    mcrain

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  18. Ugg macrumors 68000

    Ugg

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    #18
    Is autism a medical condition? If so, do you believe that medical conditions shouldnt be taken into consideration? Why? Survivability is an integral part of any proposed surgical procedure.
     
  19. ucfgrad93 macrumors P6

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  20. Ugg macrumors 68000

    Ugg

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    #20
    Fame and or fortune will always have an impact. Jobs seemingly did nothing to acquire his cancer, Cheney's lifestyle choices most likely contributed to his heart problems, Mantle's drinking destroyed his liver.

    Bradl seems to think that disability should not be a factor in deciding who gets a liver despite the harsh reality that disabilities can lead to worse outcomes for transplant patients.
     
  21. bradl thread starter macrumors 68040

    bradl

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    #21
    That is not what I am trying to say, nor think.

    What I am trying to say is that should a disability be the deciding factor as to who gets approved for a transplant or not? The patient in question seemingly did nothing to acquire his autism. Should that exclude him? My SO did nothing to acquire her blindness; in fact, it was medical malpractice. Should that (her disability; she is blind) have excluded her from being added to the patients list for cornea transplants? I would hope not, since she actually had three of them before she was 12.

    If a disability is an excluding factor, then there are a LOT of people who shouldn't be on that list, yet are, yet have received transplanted organs. So the actual questions are:
    1. should a disability be an excluding factor (read: pre-existing condition) for being placed on the patients list for an organ transplant,
    2. why, and
    3. if the oath physicians swear to, for all intents and purposes, states "do no harm", their action in denying this, or could be subsequent inaction, in doing nothing for this patient could cause irrevocable harm to him, leading to his death. How could they let that happen, yet still swear by their oath to "do no harm"?
    We aren't talking stats, wealth, or money it takes to get one expedited, or what have you. All of that aside, why should doctors feel it is okay for someone like Mantle or the guy who drank in excess to get a transplant, when someone like this guy gets the shaft?

    BL.
     
  22. AhmedFaisal, Aug 15, 2012
    Last edited by a moderator: Aug 15, 2012

    AhmedFaisal Guest

    #22
    Again, you are building a false argument. We are dealing with a scare resource. One of the criteria of access to the transplant is time on the waitlist. So if there is someone that based on their pre-existing conditions shouldn't receive a transplant, period, then they shouldn't be on the waitlist. As such if the criteria define someone as excluded, they are not "legitimate" by any reasonable definition unless the criteria itself are changed.

    As for Steve, arguably it demonstrates how one with the economic means can game the system. That being said, he still had to meet the criteria to qualify for a transplant in Tennessee. Since in Tennessee the wait lists are shorter, his number came up quicker and he had means to get there within the required timeframe. Is that fair, no it's not but it's the reality when one person has access to a private jet and the other does not. This also applies to Dick Cheney and Mikey Mantle. Based on the prespecified criteria, their number came up when a transplant became available. Human perception plays no role in this, thankfully.

    Under current guidelines that is true, and until the medical community says differently, that is the reality. Interest groups for autistic people can challenge the guidelines and ask for them to be changed, but until then, I would expect these guidelines to be maintained.

    1. and 2. are debates that are ongoing as the guidelines are adapted and expanded, who gets what score and who gets excluded. This is not set in stone but gets regular updates. Nobody in the medical community takes these decisions lightly and they try to come up with a system that is fair and takes into consideration the medical need, potential benefit to decide who gets scored how when distributing a scarce resource.
    3. Again, "do no harm" is not absolute, it is "minimize harm" and it is not exclusively tied to the individual patient. It also applies to patients as a group. You could compare it to a situation where you have 100 patients with the same deadly disease but only 10 injections of the drug required to cure them. As a doctor you now have to decide who gets one of the 10 shots and who doesn't. That is what we are talking about here and so far, Medicine has done a pretty decent job with takling that questions.

    As for the individual doctor, he should not have to decide in such a situation. In fact, one of the advantages of the system is that the individual physicians don't have to make that decision because the system does it for them reducing the risk of bias and doing harm to other patients letting your personal opinions guide who you give access to the scare resource to.
     
  23. bradl thread starter macrumors 68040

    bradl

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    #23
    So in short, access to wealth enabled him to advance further up the chain to be able to get the transplant he needed. Thank you for proving one of my points.

    And we wonder why our healthcare system sucks; when guidelines take priority over the actual patient's life. That again brings up the debate on healthcare. But let's do some research: How many livers were available for Jobs, compared to how many hearts for this person? I'd love to see the numbers on that, since most to all organs may be a scarce resource.

    BL.
     
  24. AhmedFaisal Guest

    #24
    You know, you have offered a lot of criticism and a lot of appeal to emotional platitudes. Tell me how you would handle it without introducing bias and wasting valuable organs if you think the system sucks so much.

    I am one of the harshest critics of the US healthcare system and I think it stinks to the high heavens but when it comes to transplant distributions I have yet to find a better and fairer system than the US one. The only aspect that may take consideration is the concept that you can register for a transplant in any state as long as you can get there in time. That probably needs to be fixed to that you can only register in your state of residence.
     
  25. noisycats, Aug 15, 2012
    Last edited: Aug 15, 2012

    noisycats macrumors 6502a

    noisycats

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    #25
    While I feel for the family and in no way want to minimize what they are experiencing, you are placing way too much faith and authority into the "Oath".

    1. It is quaint and outdated (in parts).
    2. It is not required to graduate (most) medical schools.
    3. It has no real basis in modern law.

    The basic thoughts and tenets may be admirable and even defensible, but it is far from being absolute or, in some cases, appropriate.

    As for the "do no harm" tenet, that has been mostly determined by medical ethicists to apply to active treatment, not active non-treatment. Put another way, physicians did not cause the autism nor the cardiac defect -- so in essence, they have done no harm.

    Fight this situation with anything other than the Hippocratic Oath ... that dog won't hunt.
     

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