Doctors Versus Disabled Patients

[Shane for Wax]

Who's got the right to say disabled people get less out of life than neurotypical people?

Exactly. We already have guidelines to prevent someone actually undeserving of it (as I mentioned, drug addicts cannot be put on the list until they have been clean x amount of time. Which is a lot more logical than saying that someone with Down syndrome is not eligible at all no matter how high functioning or clean they might be).

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.

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.

How do you objectively decide who has a benefit to society? Stephen Hawking has ALS. Would he be on the eligible list or not? And why would you say so versus someone who has Down syndrome or any other developmental problem?

I'm not trying to be difficult or pick a fight. But it really does scare me that some doctor who doesn't even know me outside of my file could decide whether I'm worthy of a transplant or not based on something that really does not affect whether I will reject the organ or not. Nor would it affect how my recovery would go. Certain things should not affect whether I am eligible or not. Being disabled is one of them.

[Sleepy]

Certain disabilities shouldn't affect whether you're eligible, for sure. But again, when it comes to choosing between two people, one of the things the boards have to determine is who will get the most out of the organ. Given the slew of medical problems that accompany Down's syndrome, they would probably lean towards the non-disabled person.

[Shane for Wax]

Unless of course it never gets to the board. Which is part of the whole problem.

[mellenORL]

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.

[RavynousHunter]

You know, I personally find it odd that deciding what happens when and after you die is an "old person's worry."  It'd be far more reasonable to have such things already planned out before you're quote-unquote "old," so you have one less thing to worry about when you should be enjoying the last years of your life.

To that effect, I already know what I want when I die: take what you can from my body that's useable, try to preserve my brain (with orders to use the data to make a robot me if/when such becomes feasible), closed casket funeral, and cremate me.  Now, all I have to worry about in my final years is a will when I have actual assets to give to people.

[Osama bin Bambi]

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.

I must confess that I am not on the organ donor list. I was asked when I got my driver's permit for the first time, but I said no because I needed more time to think about it. I know this sounds selfish, but I am afraid that, in the aftermath of an accident, I am diagnosed as being in a persistent vegetative state, the doctors will not respect my wish to wait a certain number of time to see if I wake up. Some people who are diagnosed as being in PVSs do wake up, and although it's unlikely, I still don't feel comfortable with it.

[Shane for Wax]

That is actually one of the most prevalent fears preventing people from signing up. I haven't heard many cases of such a fear playing out, tho.

[Witchyjoshy]

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.

[Askold]

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.

Well maybe the fact that the donated organ "keeps on living" after the death of the original owner's body is different than the entire body slowly decomposing or being cremated but at least staying "together" for it.

As for the OP, things like this are a bit iffy because it leads a slippery slope down to what exactly are reasons to not give a new organ to a person. It is simple to justify "your body has low chances of accepting the new organ" or "reasons X, Y and Z are likely to cause your death even if you get this particular organ" but once we get down to "I don't think people with Down syndrome should get new organs because..." Because of what exactly? They don't matter? They aren't as important as "normal" people?

That paths leads to some pretty dark places and I'd rather we'd not go down there, again.

[Sylvana]

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?

[Yla]

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.

Universal donation usually means opt-out. You can declare that you don't want to donate.

[Shane for Wax]

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?

You make it seem like I am fully unaware of the actual process. I know the process. And I know that the list is gargantuan. But by automatically disqualifying someone based on a disability outside of control, that is wrong. I have a problem with the automatically part, and I'm not sure people are understanding that very key word is my problem with this whole thing.

It's like donating blood and how gay men are automatically disqualified from giving blood based on being gay. There's an element here that does not belong in medicine.

[Yla]

Ah, I think we (me at least) talked about different points. Reading comprehension ftw. I had assumed this was about giving disabled people lower priority than able-bodied.

But an a priori 100% disqualification for disabled people is not okay at all.

[Shane for Wax]

No worries. I probably could have made things clearer. Apologies.

Yeah, it's the latter. Along with that, an investigation showed they weren't even consistent with how they figured out who was eligible and who wasn't.

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.

[Sylvana]

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.

However, the example you provided and the vast majority of cases is that money, bias and corruption are the primary motivators in any kind of organ recipient selection. If the powers that be want to they will whitewash your problems and you will get your organ, if they want it to go to someone else, they will find a reason to disqualify you or to rank you negatively against their preferred recipient. Like I said earlier it makes me sick that the former minister of health literally destroyed 3 livers with alcohol and as a result prevent two people from receiving a liver they undoubtedly needed.