Five-month old Maverick Higgs was born with a severe heart defect, and two surgeries later was still in heart failure. He needed a heart transplant, and fast. But after initially saying he was a candidate, the child's New York-Presbyterian doctors decided there was nothing more they could do to help. They said Maverick had six months to live.
The official reason given for denying Maverick the transplant was because he suffered from Coffin-Siris, a rare genetic defect that the doctors said would put him at risk for infection and tumors. They provided Maverick's parents with a study on the defect.
But when Maverick's mother, Autumn, contacted the study's author, she discovered that there was no evidence to support the theory that children with Coffin-Siris had compromised immune systems.
She was confused, but excited. But when she told the doctors, they still refused to go forward with a transplant to save Maverick's life.
And Maverick's mother figured out the most likely reason why was because the genetic defect did have some documented effects — namely developmental disabilities.
This weekend, CNN published a great, in-depth look at organ transplants and the vague, shrouded methods that doctors use to decide who gets a transplant and who doesn't. In the past, physicians were straightforward about denying transplants to disabled patients — "We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations," one doctor explained, denying a child a transplant in 1995.
But now, in an effort to avoid public outrage, some doctors manufacture other excuses.
Maverick's parents applied to four different hospitals, three of which turned her down, citing the Coffin-Siris defect or, in one case, "the big picture."
The number of people on the waiting list and the shortage of organs results in some really nasty moral decisions. When you've got two roughly equal people and one kidney, what's the best way to decide who gets it?These moral grey areas as they provide a testing ground for professionals. Who determines what is better and why? As a professional you are expected to recognize when your objectivity is compromised then recuse yourself. If you are unable to do so then a third party steps in and throws you out.
My post didn't say anything about whether I agree or disagree, just an overall comment on the matter. I can't say for certain who would get the organ in the drug abuser vs. Down's syndrome guy since it depends on a number of things (including the doctor), but it is a particularly sad situation all around.
It's why I'm an organ donor first and on the list to be used in the body farm as a second option in case my organs are too bad for a transplant but a good exercise for the body farm.
Though I am upset that people with certain unrelated disabilities are just not even considered for the list.
Who's got the right to say disabled people get less out of life than neurotypical people?
Benefit to society would be another argument, if all other things are equal.
I was starting to compose a post here, and then I understood the importance of whether the term should be 'disabled' or 'differently abled'. Makes a world of difference.
I'll come back to this topic later.
Really, between the wealthy and powerful being able to manipulate the system, the organ black market, and the unspeakable ethics of deciding who lives and dies based on X medical criteria (as no doubt it varies around the world), the only viable solution is universal donation by default.
I think for that reason it should be lobbied for rigorously world wide. As others have pointed out, universal donation would very quickly solve these dilemmas, even with the opt-out being integral to the law changes.
People just don't think about doing organ donation; it's a morbid topic for them. As is thinking about pre-planning for their funerals. That's something that traditionally is thought of as an old person's concern. And nobody thinks about how they could die at any time from an accident. And they just don't get the continuous reminders and education about the topic enough, or I seriously think there would be many more organs available now.
I've heard of all of one case of it happening. It was a discussion as part of ethics, and the doctor responsible was charged with murder.
As far as religion goes, I know that Zoroastrianism holds that the body should be kept intact because your body affects your spirit somehow. I don't know how they handle the deal with decomposition, but that's what they believe.
They believe it to the point where the family of a Zoroastrian who put himself on the organ donor list vetoed it after his death. I'm bothered by this.
Would I be undeserving of a kidney transplant because I cannot walk, because I am functionally paralyzed from the waist down? Would I be undeserving because I have depression? The articles I'm reading give me a resounding 'yes'. For things outside of my control. Even though I'm perfectly within the guidelines where everything else is concerned. The doctors are operating under a bias that should not exist where everything else is equal.
Universal donation usually means opt-out. You can declare that you don't want to donate.Really, between the wealthy and powerful being able to manipulate the system, the organ black market, and the unspeakable ethics of deciding who lives and dies based on X medical criteria (as no doubt it varies around the world), the only viable solution is universal donation by default.
I think for that reason it should be lobbied for rigorously world wide. As others have pointed out, universal donation would very quickly solve these dilemmas, even with the opt-out being integral to the law changes.
People just don't think about doing organ donation; it's a morbid topic for them. As is thinking about pre-planning for their funerals. That's something that traditionally is thought of as an old person's concern. And nobody thinks about how they could die at any time from an accident. And they just don't get the continuous reminders and education about the topic enough, or I seriously think there would be many more organs available now.
I might be wrong about this, but organ donation may be frowned upon according to some religions because it could be seen as mutilation of a dead body. Also, there's the issue about respecting the personal wishes of the owner of that body.
Would I be undeserving of a kidney transplant because I cannot walk, because I am functionally paralyzed from the waist down? Would I be undeserving because I have depression? The articles I'm reading give me a resounding 'yes'. For things outside of my control. Even though I'm perfectly within the guidelines where everything else is concerned. The doctors are operating under a bias that should not exist where everything else is equal.
It is easy to disqualify people like drug addicts, but when you have to choose between two perfectly healthy people (in all regards except for the organ they need) then such simple aspects such as being disabled can and does come into play. Remember, that between two people who are otherwise healthy when determining who gets an organ, you are still consigning the other person to die. You claim bias, but saying that it is unfair and biased for a person with a disability to be given the organ is also unfair as you are also consigning someone else who is healthy to death.
Medicine does not work on some kind of system on political correctness, or justice. It works on a system of triage. Who can be saved, and who has the highest chance of surviving. A person with a disability may be able to surpass a healthy person for an organ on grounds as simple as the healthy person having waited too long and as a result being too weak to have a high chance of survival.
Of course in all these examples I have given I have used just two people needing an organ as the example, but in reality the number of people needing organs is in the hundreds meaning that often the selection is between a group of perfectly healthy and eligible people. People with disabilities, just like people with addiction and other problems dont get close to that group (outside of corruption). After all, how do you decide between two equal perfectly healthy candidates?
And for one case, once it was proved that they weren't immunocompromised, which is why the doctor didn't want to put the child on the organ transplant list, they then scrambled to come up with another reason why they didn't feel like the child was a candidate. While I can understand they might not just lay down all the problems preventing someone getting on the list, it still smells bad to me to give one reason then when that one is proved wrong they mention a different reason.
And for one case, once it was proved that they weren't immunocompromised, which is why the doctor didn't want to put the child on the organ transplant list, they then scrambled to come up with another reason why they didn't feel like the child was a candidate. While I can understand they might not just lay down all the problems preventing someone getting on the list, it still smells bad to me to give one reason then when that one is proved wrong they mention a different reason.The problem with people with disabilities being declined automatically will only be resolved when the number of doner organs exceeds the number of healthy people needing them. Right now, it is simply a matter of expedience to limit the list that the final decision gets made on.
And for one case, once it was proved that they weren't immunocompromised, which is why the doctor didn't want to put the child on the organ transplant list, they then scrambled to come up with another reason why they didn't feel like the child was a candidate. While I can understand they might not just lay down all the problems preventing someone getting on the list, it still smells bad to me to give one reason then when that one is proved wrong they mention a different reason.The problem with people with disabilities being declined automatically will only be resolved when the number of doner organs exceeds the number of healthy people needing them. Right now, it is simply a matter of expedience to limit the list that the final decision gets made on.
I don't think so. The problem will be resolved when people stop treating neuro-atypicals like they're lesser beings.
Like Shep has been consistently saying, it's not a case of a disabled person being passed up for someone less disabled, it's that the disabled people aren't even being considered or factored at all. They are effectively non-existent in the eyes of these doctors, and that needs to be addressed post-haste, not when we "have enough organs to go around".
Strongly agree, Magus. When you extrapolate the practice just one half a degree, it is clearly a de facto death sentence for disabled transplant candidates, and I think legally it is unconstitutional via several clauses, including the 14th, and the ADA.
The issue isn't over whether or not a disabled or enabled patient deserves the organ more. The issue is over the fact that the disabled patient isn't even being considered at all.
The ethical dilemma isn't even being reached because it's not being allowed to happen in the first place.
Well, since you said that you're going to sit this one out, I'll respect your wishes.
To other people on the forum who are still unconvinced, here's a hypothetical scenario. A trans* person is kept off of the waiting list simply because they are trans*. A cisman is admitted to the list with no argument whatsoever. Does that sound like a simple case of an ethical dilemma?
Well, since you said that you're going to sit this one out, I'll respect your wishes.
To other people on the forum who are still unconvinced, here's a hypothetical scenario. A trans* person is kept off of the waiting list simply because they are trans*. A cisman is admitted to the list with no argument whatsoever. Does that sound like a simple case of an ethical dilemma?
Yay neurotypical/cisgender privilege then. Everything is right with the world. </sarcasm>Yay for ignoring the reasons Sylvana cited and behaving like it's all about cissexism.
Yay neurotypical/cisgender privilege then. Everything is right with the world. </sarcasm>Yay for ignoring the reasons Sylvana cited and behaving like it's all about cissexism.
Her reasons were effectively "neurotypical cisgendered people get more out of life than neuro-atypical and transgendered people do, so the doctors deciding to completely exclude the latter in favor of the former are doing the right thing".
I don't know who should get it. That's not for me to say.
What is for me to say is that both should be considered. Anything else is blatant discrimination against neuro-atypicals.
In short, the scenario you presented should be happening. That's all I've argued and all I will argue.
I don't know who should get it. That's not for me to say.
What is for me to say is that both should be considered. Anything else is blatant discrimination against neuro-atypicals.
In short, the scenario you presented should be happening. That's all I've argued and all I will argue.
If both are considered but the one free from the neurological issues always loses what than is the point?
I don't know who should get it. That's not for me to say.
What is for me to say is that both should be considered. Anything else is blatant discrimination against neuro-atypicals.
In short, the scenario you presented should be happening. That's all I've argued and all I will argue.
If both are considered but the one free from the neurological issues always loses what than is the point?
Did I say that the one free from neurological issues should always lose?
*re-reads post* Nope.
In fact, I explicitly said I don't know who should "lose". Just that both should be allowed to "compete", instead of one always being excluded.
Shoving words down people's throats is a most dishonest tactic.
Calm down, I didn't mean to make it seem as if you said the one with neurological issues would lose.
I don't know who should get it. That's not for me to say.
What is for me to say is that both should be considered. Anything else is blatant discrimination against neuro-atypicals.
In short, the scenario you presented should be happening. That's all I've argued and all I will argue.
If both are considered but the one free from the neurological issues always loses what than is the point?
That being said, if they always lose, that is still pretty much discrimination. But it's less discriminating than simply being excluded from the list at all, because in the event that TWO organs are available and two people need it, then both will get it. Whereas before, the organ just gets put in storage and the person with the mental illness wouldn't be able to get it at all due to not being on the list. An important thing, which I don't think Sylvana took into account.
Pardon, are you saying that people with Asperger's and Bipolar Disorder have a lower chance of survival?
'Cause I don't think they do.
You can harp on about "political correctness" all you want, but it's about anti-discrimination. Would you support it if a black person was put behind white people because "black people are more likely to be murdered"?
Triage is the process of determining the priority of patients' treatments based on the severity of their condition. This rations patient treatment efficiently when resources are insufficient for all to be treated immediately... Because treatment is intentionally delayed or withheld from patients, advanced triage has ethical implications.
1. Snarky GIFs do not make a point. I'm kind of sick of seeing the same posters use them ad nauseam.Slightly off topic, but fucking thank you. I thought I was the only one who was fed up with it.
*with the intention of lightening the mood somewhat* Jerry, Jerry, Jerry...?{rant}{more rant}
I thought you were going to sit out of this conversation, Queen?
I thought you were going to sit out of this conversation, Queen?
I tried to sit it out, I really did, but this conversation just looked like too much fun for me to avoid.
Oooh, can I have some?Sure, what would you like? Hot dog? S'more? Campfire baked potato? The popcorn will be ready in a minute.
I thought you were going to sit out of this conversation, Queen?
I tried to sit it out, I really did, but this conversation just looked like too much fun for me to avoid.
Alright, then I have a simple question for you.
Do you think a doctor should be allowed to exclude black people from the list?
1. Snarky GIFs do not make a point. I'm kind of sick of seeing the same posters use them ad nauseam.
2. The MLP reference was necessary to say, "the world isn't sunshine and unicorn farts." What part of "PEOPLE WILL DIE," is so hard to understand? There isn't going to be a "happy ending" only a "less worse" one.
3. From Wikipedia,QuoteTriage is the process of determining the priority of patients' treatments based on the severity of their condition. This rations patient treatment efficiently when resources are insufficient for all to be treated immediately... Because treatment is intentionally delayed or withheld from patients, advanced triage has ethical implications.
4. Do you know what it means? There is a bit of difference between "going to the hospital throwing up" and "I need one of a limited few kidneys." They could realistically treat everyone throwing up (unless it were life threatening and they had limited vaccines) your conjecture proves nothing.
Would it change anything if I told you that her Down's Syndrome had no correlation with her death, and that even neurotypical cisgendered people sometimes die after an organ transplant that should've worked?
End result, even if the organ had gone to someone else, we still could've ended up with two dead bodies instead of one.
Would it change anything if I told you that her Down's Syndrome had no correlation with her death, and that even neurotypical cisgendered people sometimes die after an organ transplant that should've worked?
End result, even if the organ had gone to someone else, we still could've ended up with two dead bodies instead of one.
But would it change ANYTHING at all for you to admit that she did get her transplant and therefore was not precluded as you've been saying?
Would it change ANYTHING at all that the fact that this still happens to other people based off of irrelevant disorders?
Seriously, you seem to believe that CDR Shepard and I are upset about this one person. We're upset about all the OTHER PEOPLE this is happening to, as well.
Maybe if you made the effort to understand your opponent's arguments instead of being caught up in your own, we could get somewhere.
Also, I did answer your question. Go back and read it again.