32
votes
Compensating compassion | Too few people donate their organs, dead or alive. How can we make it easier to donate, but avoid the abuses that some fear from cash payments?
Link information
This data is scraped automatically and may be incorrect.
- Title
- Compensating compassion - Works in Progress
- Word count
- 4781 words
From the article:
...
...
...
...
I donate platelets regularly and honestly a major part of going is forgetting how uncomfortable it is. But of all the parts of whole blood that I expect to be synthesized I feel like we should be able to figure out platelets in my lifetime. Granted, I'm not educated in this field.
What makes it so uncomfortable? Is it just because it takes so much longer or is there another factor?
Can't speak for OP but for me it's a few things.
The next factors aren't physically uncomfortable specifically, but they do make donating platelets more awkward.
My list makes it sound awful, but it really isn't all that bad. If you're okay with needles and blood, I would really recommend anyone who can donate (whole blood or platelets) to do so if you can. A triple platelets donation can help three adults or twelve children, for example, and just knowing that is so rewarding. In the UK, donors are notified to which hospital your donation ended up at. Receiving that email is the highlight of the process to me and makes all the other awkwardness worth it.
I've donated plasma as I'm AB+ and my blood is basically worthless. But, my plasma is really valuable as I've been told it's the universal donar plasma.
Anyway, what you've said is 100% correct. The most uncomfortable part for me was holding my pee the whole time while they're pumping you full of liquids and getting you to chew on tums tablets. I mean, even if they'd give me a Gatorade bottle to fill up halfway through, I'd be more likely to go more often. It's just such a process and kills my bladder.
Adult diaper ? I know postpartum women use them for day to day life during recovery and so do astronauts during launch.
I'd prefer to not stew in my own urine lol
It's just a backup for if you don't make it. Also, astronauts! - in all honesty I get it. Thank you for your donations regardless
Thanks, that's very informative!
In addition to what @Arthur said, which is a good list, they need to add an anti-coagulant to the blood that is returned. The chemical that is common for this makes your lips and stomach feel weird and tingly. That’s why they give you tums. The calcium in the tums supposedly counteracts this.
I also usually feel a tiny bit weird/lightheaded/woozy for a period of the donation. Never enough to pass out or ask to be disconnected. But it’s uncomfortable.
For me the sensation of having my artery inflated and sucked out gets really uncomfortable after an hour or so. The vein gets sore. And then you have to keep going for another 15 minutes (I’m eligible for triples but refuse to do them after my first time).
Edit:
As for things in favor of going:
This is a great way of putting it.
Thank you for donating. As someone with severe anemia, I've never been able to donate any sort of blood, so I appreciate that someone else does.
I think that is a very positive and encouraging system to motivate people to be organ donors.
So I understand the ethical dilemma around paying people for organs while they're alive. But what about a tax credit if you're on the donor registry? To me this seems completely in line with what taxes are supposed to do ideologically, which is to make sure everyone gives back to the society they benefit from. A great way to do that is to be an organ donor.
Also why do you need family request if the person opted-in?? I'd be so pissed if a family member says "nah I don't think so" if one of my organs was needed, directly defying my wishes.
If I read it right, the requirement for family approval was in the places where organ donation was opt out, but with the family having the final say, because the family having no say was politically untenable.
I wonder if you could write your will in such a way to avoid this: I leave the bulk of my wealth to a medical charity unless my organs are made available for donation.
That doesn't seem to be the issue? I would guess that, if the person who died clearly said what they wanted, the family would normally respect that. But they won't necessarily respect the state's default choice for someone who didn't say either way.
"Opt in" versus "opt out" is about the defaults, not about what happens for people who said what they want.
Unfortunately, many people oppose tax credits for the exact same reason direct cash payments are opposed. Though frankly I'm in favor of paying people that are willing to donate to society. I think people that donate organs should absolutely have their goodwill financially compensated.
The reason direct payments are dangerous is then you end up with a system where rich people are not encouraged to donate, but poor people may see it as their only choice to survive; further accelerating our cultures rapid decent into insane class divide.
Ex: A homeless person "donates" a kidney to a rich CEO to get themselves off the street. Is that functionally different from a rich CEO taking a kidney from a homeless person if that person believed they had no other choice to survive?
I personally think donating an organ is probably the most someone can possibly do, so they do deserve financial credit, but I'm also terrified of the repercussions of a system where that's allowed.
Don't say "opt-out doesn't work" when your opt-out is actually an opt-in with a mustache, that's ridiculous. I'm Belgian, and my wife and I have explicitly said to each other that we're ok to donate our organs... Even though we shouldn't have to.
Yeah I don't get why that's even considered an opt-out system. In the US, most people are exposed to the opt-in system when they obtain or renew a driver's license (or non-driving state ID card I believe). You check a box on your application, and that's it. In order to change that to an opt-out system, we could just invert the question (ex. "do you want to opt out of organ donation?")
Why bring in family consent when that isn't a factor in the opt-in system anyway?
It is still a factor in the opt-in system. If I die, my next of kin can override my choice to donate my organs. The article notes that politically people it hasn't been manageable to remove familial override.
Are you talking about the US or Denmark? As far as I can tell in the US, the family of a deceased person cannot override the choice to donate organs, assuming that the deceased person made that choice properly while they were still alive.
I'm referring to the US, but you did send me down the rabbit hole. In 2006 we* passed a law that technically makes the choice non-overrideable, however, in 2013 there's no article about how many hospitals wouldn't proceed without family approval despite this law. But it isn't clear that this is still an issue. I first signed up prior to that law change (and have probably signed up again aince) so i may have just retained that old info. thanks for making me check!
*I think federally, definitely multiple states did but it's late and I may have missed something.
Maybe a better way to phrase it is that, for political reasons, you can’t get a true opt-out system? The family will have a say.
I would prefer if organ donor was a "post death" discovery. There are concerning incentives with knowing that if your patient dies it might help someone else (or yourself depending on how organ incentives are handled)
Is there any evidence that an injured person in the US has ever been deliberately killed against their will so their organs could be used to save another?
There isn't even a good selfish incentive here. ER surgeons have no control over who gets the donated organs. The organs get packaged up and shipped off to whatever hospital is hosting the next recipient on the waiting list. All that shows up on the doctor's record is another lost patient.
Let me put it this way.
In my state alone, there is a well known case of a clinic reusing needles. They exposed some 40,000 people because of this. The state medical board looked like they weren't even going to try and do anything about it until the mayor weighed in (which is even more absurd than it sounds).
So in short, I see no reason to assume someone wouldn't try something stupid if given the incentive.
And what is the incentive?
It already is
It's literally stamped on your drivers license in my state.
Your doctor is typically not checking your driver's license during medical emergencies.
If you are brought into the ER, doesn't the EMT staff have all that information on a form for them? And if you're already in the hospital, isn't that information filled out on entrance? I've always had to show an ID to be admitted to an ER, even in an actual emergency
I used to be an EMT. At no point during the process did we ever look at or record organ donor status. Sure, I could have theoretically dug through a person's pockets to find their drivers license and look for the stamp, but there's no time to do that if a patient is in critical condition or has no vitals because one of us would be busy stabilizing them or performing CPR the entire time (can't pronounce anyone legally dead unless there's no way they could be alive, such as the lack of a head).
I currently work for a healthcare system in data science. Organ donor status is recorded in the electronic chart, but it's pretty buried except for the the people who are inputting the information (registration) and the staff involved after a patient has been pronounced dead (transplant teams, etc).
The idea that anyone is paying attention to this during medical care is just scare tactics - it's emotional nonsense made up to justify the opinion that someone doesn't want to donate their organs. If you don't want to donate your organs, that's okay, that's your choice... but your donation status does not change how the medical system treats you.
They take a copy of the ID at admission, so the doctors have access to the information, but that doesn't mean they're actually looking at it or paying attention to it. It doesn't benefit the doctor for you to die, it makes them look bad to lose patients, and they can't control where those organs go, so it's not like they can let you die to benefit specific person even if they're willing to take that reputation hit. They'd have to be risking their careers on the simple belief that the random people who get your organs would be more deserving of life than you. It's not impossible for a doctor to end up acting on that belief, but it's probably equally likely as a doctor becoming an "angel of death" style serial killer.
I work in Healthcare administration, not in an emergency setting, but we use the same EMR as most of the emergency settings in our area. The organ donor status isn't difficult information to find, but it's also not nearly as prominently displayed as more important information like name, DOB, height, weight, allergies, even insurance carrier. You'd have to be looking for it, and people would notice if a doctor was regularly pulling that information and then losing patients.
I go to the ER a lot, you don't have to show your physical ID. It may depend if they have you on file or not, but registration comes around and just confirms things.
I don't person buy that doctor A is going to treat you differently because they think that your organs could go to another patient - who is not a patient or under Doctor A's care, isn't in the same hospital, etc. it just isn't the realities of how donation works.
This is not true in my experience. I spent most of the last two years going to the er and they always asked me for my id.
As for the rest of this, if they don’t care and don’t need it then we all agree it probably shouldn’t be on the drivers license then?
They mostly don’t need it, but when they do they will need to know in a hurry and perhaps nobody will be there to tell them?
It could be solved with good enough information technology, but that would require a system.
Sure, just saying that i was required to give my ID. I suspect this varies a lot by location.
It likely varies by location then. My partner's been in and out of the ER for a decade in multiple cities. I cannot recall him ever being asked and I'm usually the conscious, functional, not in crippling pain person.
I don't care if it's on the driver's license because I don't believe there is any incentive for doctors to let a patient die/kill a patient to harvest their organs. It doesn't make sense. There's not even an incentive for a hospital system because organs aren't distributed that way.
I am far more worried about a system that pays poor people for their kidneys and doesnt provide medical care to those people.
I'm not sure about it one way or the other, I was just curious about the statement that a doctor has no way of knowing when they're working on a patient.
I personally don't think they would, but I could see why someone would be concerned if they did have access to they information.
This was not the case in the major medical emergency I was involved in
The office took a copy of your driver's license, or the actual doctor who was working on you was looking at it? The information that administration is paying attention to and what the actual doctor is paying attention to are often wildly different.
We have a huge body of work around the ethics of this, and when people post these ideas they've usually ignored all of that.
It's frustrating, because there's no hope of getting movement on it unless they do the work to show why their idea is different to the hundreds of other times it got suggested and rejected.
And, again, if you have this money to give to donors you're going to get more value from that money if you spend it on prevention.
I'll just link a comment in a previous discussion: https://tildes.net/~health/19j7/a_single_reform_that_could_save_100_000_lives_across_the_usa_immediately#comment-a90w
Could you elaborate? What would you recommend reading? Which people are familiar with what literature, and how are they in a position to shoot it down?
Organs transplants frequently fail. The main reason transplants fail is because people cannot comply with the onerous restrictions in lifestyle and medication regimes. One of the possibilities for the causes of non-compliance with meds and lifestyle changes is the lack of support pre-transplant. But if you're spending a lot of time and money providing pre-transplant advice and support, well, that looks a lot like the support you'd be providing for prevention -- except prevention is cheaper and easier and more effective when done well.
The main cause of the need for liver transplant is alcoholic liver disease. We'd be doing so much good if we could provide meaningful support to people with substance use disorders instead of waiting for their livers to fail and then giving them a transplant (and then watching helplessly as between 10% to 20% return to alcohol use within the first year after transplantation).
Prevention does not help the people who need eg a liver today, but surprisingly often a liver transplant doesn't help those people much either. We hear about the success stories, we don't hear so much about the failures or regret rates.
And the current system of identifying donors, retrieving their organs, and getting those organs to the right person is often broken - there is a donor shortage, but there's also waste because the systems are ineffective. See eg this from the UK https://assets.publishing.service.gov.uk/media/63ee256f8fa8f5612d615d66/Honouring-the-gift-of-donation-utilising-organs-for-transport-OUG-report-web-accessible.pdf (also note that "paying people to donate organs" is such a non-starter stupid idea they don't bother to mention it even to debunk it)
One of the problems of organ donation is keeping the donated organs healthy before they get implanted -- simple measures like machine perfusion can dramatically increase the amount of organs that can be implanted without any increase in the number of donated organs. DCD Heart donation gives a 25%-27% increase in viable hearts. NRP nearly doubles the number of viable livers. (see above link).
There is a huge body of ethics work. Simple literature searches return many articles. The submitted article, written by a free-market economist, doesn't mention ethics, and that means it's not going to be persuasive to healthcare systems. Anyone wanting to change existing policies around organ donation needs to start engaging in the ethics, and they never do, and so they never get listened to.
The article is, from a healthcare policy POV, deeply unserious, and not worthy of discussion because it shows such poor understanding of the topic. It may be moderately interesting from an economics POV.
These are good points! Thanks for giving a wider perspective on organ donations.
I’m wondering what you mean by “not going to be persuasive to healthcare systems?” Presumably you mean the people who run these systems? Who are they? How does policy get made? I know little about these things. (I’d guess it varies a lot by country.)
Meanwhile, the conversation on Tildes is often more serious than other places, but when it comes down to it, we’re not that serious. We’re not changing any healthcare policies around here, and we’re going to keep discussing things we haven’t read the literature on, just because someone shared a link to an article that they thought was good when they read it.
But maybe we could start with a better article? If you’ve read some portion of that “huge body of ethics work,” what would you recommend as an introduction?
Looking at that link: Honouring the gift of donation: utilising organs for transplant
This seems to be a UK government report from a committee looking into how to improve the organ donation process in the UK, covering a wide variety of issues.
But to pull out one part that is about supply, they do seem to assume that increases in supply would be good, but consent rate isn't the only issue:
(Since the consent rate started at 60%, there's only so much that could be done by increasing it; the supply couldn't be doubled by increasing consent rate alone.)
For Wales, there's a footnote pointing this article:
The effect on consent rates for deceased organ donation in Wales after the introduction of an opt-out system
From the abstract:
Here, "significant" might mean "statistically significant," which isn't the same as saying that there was a large effect.
Looking at table 1, an issue is that Wales isn't that big and the absolute numbers are small, fewer than 50 people per quarter. This results in a noisy signal. Maybe the signal would be clearer from a graph, but they didn't do that, relying on statistical analysis which is beyond what I can easily evaluate.
this is a really bizarre, and to my mind just flat-out untrue, way of claiming it's affordable for everyone.
like, for a minimum wage worker, they would need to work for two years in order to afford to a kidney, and in those two years they would need zero living expenses so that everything they make goes into the kidney savings fund. which is obviously not possible for someone in perfect health, much less someone with kidney disease (as the article says, lots of people undergoing dialysis lose their jobs because of the time the process takes)
or if this minimum wage worker can save 10% of their income towards a new kidney, it would take them 20ish years? which is also obviously not feasible - as the article says, half of people on dialysis die within 5 years.
if new kidneys truly were affordable for everyone...they wouldn't need this charity?
poor people selling organs, and wealthier people buying them, is inherently tied up in income inequality. this hand-wavy attempt at "oh no it's fine anyone in Iran can afford a kidney" just rings incredibly hollow.
this, and all the other "encourage people to opt-in or not-opt-out of being donors" systems they mention seem overly complicated to me.
here's a much simpler idea:
if you remove yourself from the list, because you don't want your organs donated after you die, then you should not be eligible under any circumstances to receive someone else's donated organs after they die.
if at some point in the future there were so many donated organs that they were at risk of going unused, then we might consider allowing people who've opted-out to receive a donated organ. but as long as there's an organ shortage, if you refuse to donate your organs after death, you are SOL when it comes to receiving them while you're alive.
this might lead to some outcomes that would appear to be undesirable. say you've got 1 donated liver, and 2 candidates who need a transplant. one is a marathon runner (in other words, very healthy other than the liver disease), elementary school teacher, mother of 3. the other is a homeless alcoholic.
if the teacher renounced her citizenship in Organdonateistan, then tough shit, the homeless guy gets the liver transplant instead. her family and friends will of course be furious about this, and tell everyone they know how this woman died needlessly, all because she opted out of organ donation. and that in turn will encourage people who hear about it to want to remain on the organ donation list. there's your "nudge" (Cass Sunstein got a book deal, where's mine?)
I've written previously about this "Modify NOTA" proposal and why I think the proponents are both wrong and intellectually dishonest about what they're proposing.
What would be the benefit of disallowing people from rejoining the organ donation list? I can see the point in disallowing it for people who need organ transplants, or who have health issues that may cause them to need one someday, but I don't see a reason for it to be a blanket policy. If, for example, a healthy person who was a part of a religion that disallowed organ transplants renounces their faith, I don't see why they shouldn't be allowed to register to donate.
People rarely need organs when they are young and nobody wants your organs when they are old.
You can cheat the system by removing yourself from the list until you are say, 50.
A health based cutoff makes sense in that case. I'd rather have a healthy 50 year old heart than no heart. If you're okay enough with donating your organs to do it once you turn 50, why not just do it earlier?
I think you'd exclude more willing donors than you'd miss out on by people waiting until they were older on purpose, but that's not based on any sort of data and I'm not even sure where I'd start looking for data to back that up.
It’s more that people who are uncomfortable with donating their organs currently would have an escape hatch. They can reason that they can opt out for now, because they can change their mind later, which makes opting out easy and risk free. This assigns a cost to that decision.
Put another way, there is a fundamental unfairness in unequal participation. If one wants recipient access to the pool of young organs, one should be required to also participate as a provider in that pool. By opting out during one part of their life, they are “paying” less in the form of risk exposure and are effectively free riding.
It's not risk free, though, it's just lower risk. Younger people do sometimes need organs.
You're assuming that people wouldn't opt in until they're middle aged, but there's almost 30 years between 21 and 50. If you're 26, you've got lots of young organs and you've decided you want to opt in, too bad so sad. 35 year old organs are pretty good too, but we don't want those unless you pledged them almost half your life ago.
It just doesn't make a lot of sense.
Perhaps you could be eligible to get organs after having opted in for say, 10-20 years. Or, your priority in the queue is in part determined by how many years you have been opted in. Or, you aren’t eligible for organs that are younger than the age when you opted in.
The important part is, people who weren’t willing to participate shouldn’t have the same level of access that participants have.
That sounds like a sensible system.
The only question I'd have is how to get there from here. Perhaps you start a parallel system for children under the age of 18, with anyone already over the age of 18 (or over the ceiling of that opt-in window) stuck with the current system.
In Singapore we have two acts covering this.
One is an opt out system for all citizens above 21 covering liver, kidneys, heart and corneas solely for purposes of transplant and therapy (not reaearch). The second is an opt in system covering all organs for research as well as transplant/therapy.