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Rethinking organ donation policy
December 21, 2009 8:01 AM   Subscribe

In response to shortfalls in organ donation, policy is undergoing a serious rethink in several countries. In Australia, the government has just lifted a ban on animal-to-human transplants. In the UK, the Chief Medical Officer has called for presumed consent, while in Israel a new law gives donor card carriers a legal right to priority treatment if they should require an organ transplant. Many are looking to Spain, which leads the world, having seen the number of deceased donors per million people - a commonly used benchmark - increase from 14 in 1989 when a new system was put in place to 34.2 last year. Interestingly, people committing suicide have a higher rate of donating organs than average.
posted by MuffinMan (99 comments total) 1 user marked this as a favorite

 
Previously.
posted by MuffinMan at 8:05 AM on December 21, 2009


this is heartless
posted by criticalbill at 8:07 AM on December 21, 2009


I still don't understand why the use of an opt out system isn't universally used.

I can understand not donating organs for religious purposes, though most religions want you to help your fellow man, but I think one of the main causes is simply just laziness.

Then again maybe being anti organ donating is bigger than I thought.
posted by Allan Gordon at 8:08 AM on December 21, 2009


Virgina Postrel, previously an editor at libertarian mag Reason, and kidney donor, has advocated paying for organs (most recently here).
posted by FuManchu at 8:14 AM on December 21, 2009


Interestingly, people committing suicide have a higher rate of donating organs than average.

According to a Harvard study, three factors are common for people who commit suicide:

1. A sense of being a burden on family/loved ones/SO's/support system.
2. Isolation and loneliness.
3. The learned behavior to hurt ones self.

For someone with that mindset, organ donation fits in pretty well with all 3.
posted by stbalbach at 8:15 AM on December 21, 2009 [4 favorites]


So the Spanish system is basically, "Ask nicely?"
posted by cimbrog at 8:18 AM on December 21, 2009


[Links fixed.]
posted by cortex at 8:19 AM on December 21, 2009


I still don't understand why the use of an opt out system isn't universally used.
I tend to favour it too but it would have to be in a universal, free-at-point-of-access system as in the UK. Any suspicion that ability to pay influenced priorities would be off-putting to say the least.
posted by Abiezer at 8:20 AM on December 21, 2009


Thanks Cortex!
posted by MuffinMan at 8:21 AM on December 21, 2009


Interestingly, one of the reasons that organ donations are dropping are safety regulations, like mandatory seatbelt-wearing and helmets for motorcycle drivers. Doctors don't call them "donorcycles" for no reason.
posted by mhoye at 8:23 AM on December 21, 2009


OH MY GOD NOT THIS THREAD AGAI--

Oh. Wait. Never mind.
posted by Astro Zombie at 8:25 AM on December 21, 2009 [8 favorites]


Then again maybe being anti organ donating is bigger than I thought.

People used to object to dissection of corpses, too. And when my mom unexpectedly died, my sister said she knew my mom wouldn't have wanted to be cremated because she'd once said it "made her feel icky". I understand that one even less. People are pretty weird about what happens to their (loved one's) bodies after death.
posted by DU at 8:30 AM on December 21, 2009


Then again maybe being anti organ donating is bigger than I thought.

I wonder if the timeframe in which families must give consent and organs must be harvested is a part of the problem. A grief-stricken family member, not thinking logically, when confronted with images of their recently-alive loved one being cut up for parts gives a knee-jerk reaction of "no."

I don't think people are so much against organ donation, but are just overwhelmed by the prospect at the time they have to make that decision.
posted by jeoc at 8:38 AM on December 21, 2009


I could be an organ donor... only if the firm(s) could manage to retrieve my organs in the very slim window of opportunity they'll have between my meet with death and my being launched into the sea by use of a canon and explosives a la Mr. Duke.
posted by cavalier at 8:39 AM on December 21, 2009


I really like the Israeli method. Makes since to me. If you're going to be gracious with your body, you get some reward in return. Of course, if it's TOO effective it'll negate itself. And I guess I could see how that'd piss off the folks who have anti-donation religious beliefs. But heck, blessed are the persecuted right?
posted by toekneebullard at 8:47 AM on December 21, 2009


jeoc, see "Spain".
posted by vivelame at 8:47 AM on December 21, 2009


I don't think people are so much against organ donation, but are just overwhelmed by the prospect at the time they have to make that decision.

Yep. You nailed it. The window of opportunity is very short and the aggressive tactics that organ donation firms are (arguably) required to make are very off-putting to most people in that delicate situation.

The best organs are the organs from younger people who have died 1. not because of a long-terminal illness and 2. in a way that leaves the body pretty much intact. So, what you generally have is an auto or home accident that tragically kills someone in the prime of their life. Families are ill-equipped to deal with this anyway, but then you add to their grief someone who comes into the hospital room while the body is still warm (and functioning due to life-support systems) and starts telling the family that they need to sign these forms NOW NOW NOW and people's very lives are depending on them HURRY HURRY HURRY.

It's not an optimal situation.

I believe strongly in organ donation, but I think that the deathbed requests are the worst way to make their case. There needs to be more of an effort to really educate people about the value of organ donation, and it needs to be more than just clicking a box on a driver's license and then forgetting about it. It needs to be discussed, and at length, with your loved ones.
posted by ColdChef at 8:47 AM on December 21, 2009 [4 favorites]


"paying for organs"

Although I generally dislike Libertarian ideas, as they are, um... heartless... this could be made to work, in ways that would be very beneficial to society.

Figure out a reasonable value for insurance to pay for organs. Say, $5K for each major organ. Then figure out based upon what the average person is worth, the chance of them dyiing between birth and 18, and between 18 and death, the likely average worth after death of their organs when they die, the likelihood of that organ being used if available, etc. (Obviously, the more people who opt in, the less expensive organs would tend to be, but given there's a whole worldwide market, well... maybe it wouldn't be so bad.)

And consult parents with newborn to let them know they can have $____ today if they sign their minor up for organ donation. Likewise, give 18-year-olds $____ immediately if they choose to donate for the rest of their life. If they decide to opt out later, they'd have to pay the money back, plus interest.

Basically, it could be a good way to give people a start on the key phases of their lives.
posted by markkraft at 8:49 AM on December 21, 2009


Personally, i'm uncommitted on organ donation (ie, i'll leave it to my family). But if it becomes "opt out", i *will* opt out for sure.
posted by vivelame at 8:49 AM on December 21, 2009 [1 favorite]


My dad donated a kidney to a family friend several years ago. It was crazy to see how many disincentives there were to his act of charity.

His time off of work was only begrudgingly given, and he was not permitted (other than the medical bills themselves) to recover any of his personal expenses associated with the surgery and recovery time. The donee's family wanted to cover lost wages, but was told unequivocally by the hospital that they could not because it is illegal for someone to receive money in exchange for organ donation. He wasn't expecting to make a dime, of course, but he shouldn't have been required to lose money to give away a body part and save someone else's life.

The concept of organ markets is offputting, but thousands of people dying each year waiting on transplant lists is heartbreaking. With just about everyone else along the chain profiting from trade in body parts, it seems screwy that the body itself can't.
posted by AgentRocket at 8:50 AM on December 21, 2009 [4 favorites]


Coldchef, and yet, Spain manages to have the best rate of organ donations of the world with, well, deathbed requests.
posted by vivelame at 8:50 AM on December 21, 2009


People are pretty weird about what happens to their (loved one's) bodies after death.

"A few decades ago in Bali and other Pacific islands, people were putting their ancestors' skulls on display in their homes,"
posted by orthogonality at 8:51 AM on December 21, 2009


I still don't understand why the use of an opt out system isn't universally used.

because organ donation - writ large - means killing someone. and the state doesnt get to presume consent to kill innocent people. period.
posted by jock@law at 8:51 AM on December 21, 2009 [1 favorite]


Also: (and this is a very distasteful tactic, but...) Americans would be more on board with organ donation if there was some sort of financial compensation. I realize that this gets into a real sticky (pardon) situation ethically, but when you have someone who is in a position (like my uncle recently was) where they desperately need new lungs or they will die within days, ethics kind of go out the window. I don't know, I'm sure I haven't thought this one through. But I have had many families, when they bring up organ donation, ask what they receive in return. When they find out that they don't get anything, they change their minds. Yeah. Ick. I know.
posted by ColdChef at 8:52 AM on December 21, 2009


Coldchef, and yet, Spain manages to have the best rate of organ donations of the world with, well, deathbed requests.

Maybe it's the manner in which they ask. I've seen how they ask here in America (okay, Louisiana) and it's haphazard, aggressive, and not just a little bit insensitive.
posted by ColdChef at 8:54 AM on December 21, 2009


Although I generally dislike Libertarian ideas, as they are, um... heartless... this could be made to work, in ways that would be very beneficial to society.
Why, yes, it would be very beneficial for "our" society to have a paying market for organs. This way, the poor, who have nothing to offer to said society anyway, could, say, have their genome registered on a website, and should they be compatible with a rich productive participant, could be bribed to donate a kidney. Let's not forget the amazing prospects this scheme would have in third-world countries, where $5k go a reaaaaally long way.
posted by vivelame at 8:55 AM on December 21, 2009 [1 favorite]


It's interesting that Israel's opt-out seems more like "opt out of the system" than "opt out of giving away your guts." This makes a lot of sense. If one did not pay into health insurance, should he expect an insurance company to cover him? Surely not. The difference here is that not everyone can afford health insurance, but everybody's got the entry fee for this!

It's only taking effect in January 2010 though, so if you're an Israeli who is really concerned about what happens to your heart after you die, you've still got 9 days to go out there and get yourself some new body parts!
posted by battlebison at 8:56 AM on December 21, 2009


clarification: some vital organs need to still be part of a living syste, (though presumably unconscious and unrecoverable) to be viable for the donee. there is a substantive difference between being dead and being in a sense checkmated. some people attach moral weight to that difference and others do not. but allowing the government to dictate, even just by default, which distinctions between dead and non-dead matter is, in my opinion, emphatically problematic.
posted by jock@law at 8:58 AM on December 21, 2009


vivelame, Is that more or less humane than both forcing someone to die and preventing another from profiting off a voluntary procedure?
posted by FuManchu at 9:07 AM on December 21, 2009 [1 favorite]


FuManchu : Virgina Postrel, previously an editor at libertarian mag Reason, and kidney donor, has advocated paying for organs (most recently here).

I really don't understand why society views this issue as so controversial. You want my time? You have to pay me for it. You want my labor? Pay me for it. You want my skills? Pay me for it. So... You want my corpse? Let's work out some sort of reverse-mortgage-like arrangement... Pay me for it now, and when I die, quarter me like so much lean beef.

You need my liver, I need a new car. You need my blood, my new car needs fuel.

And don't give me any "pay it forward" karmic BS - Every step of the process involves middle-men extracting value from something they got for free. The only person who gets screwed in the process gets to die as the precursor to the whole chain of money-transfers.
posted by pla at 9:12 AM on December 21, 2009 [10 favorites]


But if it becomes "opt out", i *will* opt out for sure.

Why?

Perhaps you and some others do not understand what death is.
posted by fuq at 9:12 AM on December 21, 2009 [4 favorites]


I still don't understand why the use of an opt out system isn't universally used.

I thought along similar lines until I read The Resurrection Men- Scenes from the Cadaver Trade by Annie Cheney in a 2004 Harper's. The article complicated what seems to be the straightforwardly selfless and moral act of organ donorship into something quite different. Organ and body part donation does not appear to be the simple "remove heart/livers from the brain dead and put them into those needful" scenario that we all imagine. Cheney's article follows a New jersey businessman who trades in cadavers and cadaver parts, and exposes a crass underbelly to the whole organ donation scene.

For me, sure it would be fine to take my heart or liver and give it to someone that needs it. But if my organ donor card allows for my collagen to be harvested, traded through profiteers and middlemen to a cosmetic surgeon and injected into the lips of some vain aging rich person, I might prefer that my body not be used for that. But that doesn't seem to be a choice that we are allowed to make under current organ donor laws. You're in for a penny in for a pound with the current organ donor system, and there doesn't seem to be much clarity in the process. The assumption that your organs are simply going to save someone's life adds a comforting level of wishful thinking that covers a harsh reality that your body parts can and will be traded like any other commodity and used for things that you might not have agreed with while you were living.
posted by kuujjuarapik at 9:14 AM on December 21, 2009 [8 favorites]


I don't know how it works in other states, (IANYFD) but in Louisiana, you can absolutely dictate what kind of donation you want to do. Eyes, skin, soft tissue, organs, longbones. You can make the choice. They tell you what they want, you make the decision.

Also: What Does My Religion Say About Donation?
posted by ColdChef at 9:21 AM on December 21, 2009 [2 favorites]


Personally, i'm uncommitted on organ donation (ie, i'll leave it to my family). But if it becomes "opt out", i *will* opt out for sure.
posted by vivelame


Some people are going to be (on preview, are being) assholes about this, but I appreciate that you are expressing an opinion that is obviously going against the general consensus here. I'm genuinely curious, why do you feel this way?
posted by no1hatchling at 9:22 AM on December 21, 2009


For me, sure it would be fine to take my heart or liver and give it to someone that needs it. But if my organ donor card allows for my collagen to be harvested, traded through profiteers and middlemen to a cosmetic surgeon and injected into the lips of some vain aging rich person, I might prefer that my body not be used for that.

Yeah, and your liver might end up going to someone who voted for Bush. Better not risk it.
posted by anifinder at 9:29 AM on December 21, 2009 [3 favorites]


because organ donation - writ large - means killing someone.

clarification: some vital organs need to still be part of a living syste, (though presumably unconscious and unrecoverable) to be viable for the donee.

This sort of misconception has become more common thanks to cases like Terri Schiavo, where many people would refer to her as "brain dead" when clearly she was nowhere close. There are also right-to-life organizations (like this one) that foster confusion on this issue because they evidently think organ harvesting is a form of euthanasia. Since the early 1980's most of the US has been covered by the Uniform Determination of Death Act, which acknowledges what clinicians have known for decades, namely that brain death is as final and irreversible as death defined in any other way. A typical implementation of the act can be read here. There are a number of strict criteria for determining brain death and if they are followed, they pretty much guarantee that no neurological function beyond spinal reflexes will ever come back, and that includes basic brainstem functions such as breathing. While it is true that some organs continue to function after death as long as they receive blood and oxygen, that does not mean the person is not dead. In most cases the death of the entire body is a process that continues for several hours after the person becomes irreversibly dead. Also, some tissues (such as bone and heart valves) are transplanted after they are no longer viable and so do not require a beating-heart donor to be useful.
posted by TedW at 9:34 AM on December 21, 2009 [4 favorites]


My husband does not want his license to state he is an organ donor. He is stubborn, and just doesn't wanna do it. I always tell him that if it comes down to me making the decisions, the plug is getting pulled and every last organ is being given away. To people he would HATE, if I can help it. And then he tells me it's not going to happen, he's going to use those organs so hard no one will want them, dammit.

(all in good fun, but not intended to make light of a serious subject, one that is personally important to me.)
posted by bunnycup at 9:35 AM on December 21, 2009 [1 favorite]


Yeah, and your liver might end up going to someone who voted for Bush. Better not risk it.
posted by anifinder


I fail to see where you get the idea that my views about my liver are political. I said my liver was fair game. On the other hand, I think it is fine for me to have a moral objection to the cosmetic surgery industry. There is nothing life saving in giving someone bee-stung lips because they want them and can afford them. Want is not need and it's foolish to conflate the two.
posted by kuujjuarapik at 9:37 AM on December 21, 2009


A recent trend is swapping organs in live donor situations. People who need may not always match up with people who want to give. So a system is in place to match sets of givers and recipients. Recently 13 people were given organs in such a setup ( don't ask me where the odd number comes from)
posted by Gungho at 9:50 AM on December 21, 2009


But it's not a choice between want and need. It's a choice between want and rotting in the ground. I'm sure if doctors had a pressing medical use for your collagen, they'd queue jump the vain grannies. Why not let it be put to some use, regardless?
posted by anifinder at 9:52 AM on December 21, 2009


I RTMFA on Spain, and it wasn't clear to me how this is different from what we do in the U.S. I think we have good designated requesters and bad designated requesters here. Is it a training issue? Is it a selection (of requesters) issue?

I don't doubt that approach makes all the difference, I just wonder how they are creating a consistent approach across many hospitals at many points in time.
posted by jeoc at 9:52 AM on December 21, 2009


I've made it very clear to my family and everybody who might be involved should anything happen to me that I want anything that can be taken from me to be taken from me as soon as I'm done with it. Doing otherwise just seems weird and selfish to me.


This sort of misconception has become more common thanks to cases like Terri Schiavo, where many people would refer to her as "brain dead" when clearly she was nowhere close.

Terri Schiavo's brain was basically a pile of mush. This has been settled for years.
posted by Pope Guilty at 10:06 AM on December 21, 2009


I really like the Israeli method.

Everyone here is aware, I presume, that the Israeli Army admitted today that for some time, until the year 2000, harvested organs from bodies it recovered, both Israeli and Palestinian.
posted by Ironmouth at 10:11 AM on December 21, 2009 [1 favorite]


Let's also be quite clear: No organ donation (or any other medical procedure) has ever saved a single life.

Organ donation prolongs lives, it never saves them.

I will not be donating my organs for religious reasons.
posted by Ironmouth at 10:14 AM on December 21, 2009


Ironmouth:
What does that have to do with their new donation program in regards to models for other programs? We don't need to bring that fight to this thread.
posted by cimbrog at 10:20 AM on December 21, 2009 [1 favorite]


Let's also be quite clear: No organ donation (or any other medical procedure) has ever saved a single life.

Organ donation prolongs lives, it never saves them.


This is a bit OT, but to a family with a sick relative or loved one, the difference between prolonging a life and saving it is not real big. When my daughter was diagnosed with cancer at 2 months old, we knew the cancer was incurable and her prognosis was measured in weeks. But surgery and treatment prolonged her life, allowing her to live to almost 10 months old. In that time, we celebrated her one and only Thanksgiving. Her one and only Christmas. Her one and only New Years. Her one and only Valentines day. This in no small part due to donations - not organ, but in her case, blood and platelets, sometimes daily for more than a week.

So I'm damned grateful her life was prolonged, even if it wasn't saved. Sorry to once again launch into a tirade about my daughter, her short life, and her cancer. But please don't belittle the prolonging of life. (Unless I missed a hamburger, in which case, sorry.)
posted by bunnycup at 10:23 AM on December 21, 2009 [5 favorites]


A serious question: why are non-organ donators eligible to receive organ donations themselves? This sticks in my categorical imperative craw, but I suspect I'm thinking about it wrong.
posted by anotherpanacea at 10:25 AM on December 21, 2009 [3 favorites]


They'll be growing meat in vats to feed us all in a couple of years. 10 years after that they'll be growing organs.

This is a temporary problem with temporary solutions.*

* yes, I know it is life-and-death for a lot of people, and I'll gladly give them my organs when I'm done with them. I just think the long-term solution is better for everyone.
posted by blue_beetle at 10:25 AM on December 21, 2009




There's an as yet untested U.S. attempt to provide preferential access to fellow donors. I appreciate the concept.
posted by Phlogiston at 10:45 AM on December 21, 2009


anotherpanacea : A serious question: why are non-organ donators eligible to receive organ donations themselves?

1) Because they could change their mind (and many do) after getting replacement parts.
2) Because if non-donors couldn't, they'd just sign up the minute they needed an organ.


blue_beetle : They'll be growing meat in vats to feed us all in a couple of years. 10 years after that they'll be growing organs.

Agreed. Personally, I still want my own pithed clone as a source of spares, but I'd settle for a vat-grown 100% compatible equivalent.
posted by pla at 10:45 AM on December 21, 2009 [2 favorites]


Organ donation prolongs lives, it never saves them.

This is true of every medical treatment.
posted by prak at 10:57 AM on December 21, 2009 [13 favorites]


This sort of misconception has become more common thanks to cases like Terri Schiavo, where many people would refer to her as "brain dead" when clearly she was nowhere close.

Another brain corrupted by the religious right-wing noise machine, I see.
posted by Mental Wimp at 11:01 AM on December 21, 2009


Terri Schiavo's brain was basically a pile of mush. This has been settled for years.

I agree but she was not "brain dead" in the clinical sense; however, many people (usually not in the medical field) described her with that term. I think that a poor understanding of the concept of brain death leads many people to misunderstand the process of organ donation.

I also find it unsurprising that suicides have a high rate of donation. They are often young and healthy and given that in the US at least a gunshot wound to the head is a fairly common method they are very nearly perfect candidates. The family is overwhelmed with shock and grief and is desperate to hold on to some living memento of their loved one, and donation provides this. I had a friend kill himself several years ago and that was very much the scenario.
posted by TedW at 11:01 AM on December 21, 2009 [1 favorite]


Let's also be quite clear: No organ donation (or any other medical procedure) has ever saved a single life.

By that standard, neither has breathing.
posted by EarBucket at 11:06 AM on December 21, 2009 [6 favorites]


Let's also be quite clear: No organ donation (or any other medical procedure) has ever saved a single life.

Organ donation prolongs lives, it never saves them.

I will not be donating my organs for religious reasons.
posted by Ironmouth at 10:14 AM on December 21


This is a pretty good troll. A "classic" troll, if you will. Ironmouth knows full well that no medical procedure grants immortality, but by fake-expecting organ donation to do so, he riles up those of us who have loved ones whose lives could be saved - or "extended" if you prefer - by organ donation. He then follows up by stating that he will not donate his organs, a purely selfish act which many of us find morally abhorrent, and then caps it off by claiming it is for religious reasons, thus both multiplying the outrage felt and simultaneously protecting him from judgment, further irritating the reader.

The more I think about it, the more impressed I am. This is really a great piece in the classic Easily Correctible Fact subgenre. A+
posted by Optimus Chyme at 11:17 AM on December 21, 2009 [24 favorites]


The post says there have been calls for presumed consent in the UK, and there have, but I believe these have been rejected and there is unlikely to be any change for the foreseeable future.

I am a registered donor, if any of me is useful after my death, cool.
posted by devon at 11:24 AM on December 21, 2009


Let's also be quite clear: No coupon (or any other financial procedure) has ever saved a single cent.

Coupon usage prolongs cents, it never saves them.

A penny saved is a penny spent later. - Benjamin Franklin Ironmouth
posted by explosion at 11:29 AM on December 21, 2009 [6 favorites]


Optimus Chyme : he riles up those of us who have loved ones whose lives could be saved - or "extended" if you prefer - by organ donation.

I agree with your analysis of Ironmouth's post, but he makes a deeper point that we can't afford to ignore - How much does it "extend" life, to what quality of living, and at what cost?

Organ transplants cost a lot of money. Enormous amounts of money. As in, you could pay for primary medical care for most people from birth to first heart-attack (exclusive) for far less. I consider that one of the biggest shortfalls of the US healthcare system, that we spend literal fortunes on end-of-life care in a vain attempt to get even an extra few days - And to hell with the "death panels" bogeyman, someone *should* stand up and say, "Y'know, you had a good run, time to throw in the towel".

Personally, I like Canada's policy of giving organs to the people who will most likely use them for the longest period of time; and over a certain age, absolutely no shot at getting an organ.
posted by pla at 11:36 AM on December 21, 2009 [2 favorites]


1) Because they could change their mind (and many do) after getting replacement parts.
2) Because if non-donors couldn't, they'd just sign up the minute they needed an organ.

I feel like both of these could be resolved by making organ donation more like an ordinary contract: refusal to donate would be a breach with obvious damages. I mean, plenty of people thought unemployment benefits were for deadbeats until the market crashed. It's just weird that people would be willing to accept an organ donation without being willing to give one. It's the Golden Rule, isn't it? I thought the only people who weren't motivated by reciprocity were sociopaths....

But again, maybe I'm thinking about this wrong.
posted by anotherpanacea at 11:40 AM on December 21, 2009


And to hell with the "death panels" bogeyman, someone *should* stand up and say, "Y'know, you had a good run, time to throw in the towel".

I don't know how it works for everyone in every case, but in my experience with transitioning from treatment to hospice....they did this. But in a much more sensitive and caring way. I am participating as an author and interview subject in a hospice organization project to guide decision-making and practitioner education on just those issues, so I don't think it's something being completely ignored.

I also understand that, from an organ donation perspective, there are rules for qualifying for donation in terms of how long one is expected to live, afterwards, and that hard decisions are made because demand so exceeds supply. Although I can't find any particular documentation of that, so maybe I am wrong.
posted by bunnycup at 11:45 AM on December 21, 2009


This sort of misconception understanding has become more common thanks to cases like Terri Schiavo the New England Journal of Medicine.

In the future, I would appreciate if you'd engage the substance of my post instead of claiming summarily that I've represented a misconception and throwing out innuendo that I'm influenced by some right-wing kerfluffle from half a decade ago.
posted by jock@law at 11:59 AM on December 21, 2009


How much does it "extend" life, to what quality of living, and at what cost?

I hate to reiterate this, but the evidence of prolonged life from solid organ transplantation is pretty sketchy. (Stem cell transplantation, on the other hand, has plenty of high quality data supporting it in many applications.) Early in solid organ transplant history, the transplant community quickly solidified behind the idea of benefit before any randomized trials could be done and soon insisted that such trials would be unethical due to the "obvious" benefit. Because of extreme selection bias, it is impossible to tell from observational data what the improvement in survival actually is. Quality of life is another issue inadequately dealt with in this literature. Valiant attempts have been made to use the observational data to answer these questions, but it boils down to not being sure. I don't see this changing at any time in the near future.
posted by Mental Wimp at 12:00 PM on December 21, 2009


Mental Wimp: You don't go into any detail so I'm not sure what methodological problems there are. Because the supply of organs is (unfortunately) so limited, people go without organ transplants very often. From that set of data, it's my understanding that doctors have a relatively reliable idea of how long a person in a given stage of disease or injury will live without a transplant. They may compare this to data about the longevity of people who do receive a transplant. While it seems obvious to me on the one hand that, if organs are (for example) given only to the youngest and most needy, it would be impossible to strictly rule out youth as the reason the donees survived. That said, it seems equally obvious that a non-cancerous liver transplant is a reasonable explanation for recovering from liver cancer. Even the most rigorous of scientific studies would only give us correlation; in the face of a decent idea about causation, it seems to me that those studies might not add much to the discussion.
posted by jock@law at 12:13 PM on December 21, 2009


So I'm damned grateful her life was prolonged, even if it wasn't saved. Sorry to once again launch into a tirade about my daughter, her short life, and her cancer. But please don't belittle the prolonging of life. (Unless I missed a hamburger, in which case, sorry.)

I certainly don't mean to belittle anything, and I am sorry to hear of your lost. I am glad to hear that organ donation was able to help your daughter live longer. But I do think that the language counts. It makes it harder to think about what is right and wrong when we use precise language. Our discorse about the reality of death is sadly lacking and makes it harder to evaluate what course to take in terms of the policy of organ donation.

I do think others should be free to enagage in organ donation. Programs to increase organ donation are fine.
posted by Ironmouth at 12:15 PM on December 21, 2009


Your loss. Sorry for that error.
posted by Ironmouth at 12:17 PM on December 21, 2009


In the future, I would appreciate if you'd engage the substance of my post instead of claiming summarily that I've represented a misconception and throwing out innuendo that I'm influenced by some right-wing kerfluffle from half a decade ago.

I did address the substance of your post, with which whcih I agree. However, I'm not sure that NEJM editorial supports what you're saying re: Terry Schiavo. Can you explain why you believe it does? Perhaps there is a more direct reference to support your assertion. It has been my understanding that she had suffered an irreversible death to her brain tissue and that she was in essence brain-dead. The editorial cites as one definition of brain death: "brain-dead" patients are dead because their brain damage has led to the "permanent cessation of functioning of the organism as a whole."3 The editorial does seem to disagree with this definition, but on ethical, not biological grounds and it doesn't really address head-on whether conditions like Schiavo's fall under that rubric. However, the assertion that she was "far from" brain dead seems unsupportable under that same rubric.
posted by Mental Wimp at 12:20 PM on December 21, 2009


How much does it "extend" life, to what quality of living, and at what cost?


He's only one out of many, but my brother had a kidney transplant about 10 years ago (he had been very sick since birth) and has since bounced back as a far more productive member of society than the vast majority of health people. He is also in better shape than 90% of America (think 6 pack abs). Obviously in some cases there needs to be an assessment on whether the quality of life is worth the operation (I'm thinking more of those of advanced age) but I think in the vast majority of cases, it's very difficult to determine how someone will be affected by suddenly being healthy(er).

I also think there needs to be a distinction made between those who require organ transplants because of their own irresponsibility (smokers or alcoholics) and those who require transplants because of no fault of their own.
posted by Shizman at 12:24 PM on December 21, 2009 [1 favorite]


he riles up those of us who have loved ones whose lives could be saved - or "extended" if you prefer - by organ donation.

I agree with your analysis of Ironmouth's post, but he makes a deeper point that we can't afford to ignore - How much does it "extend" life, to what quality of living, and at what cost?

I guess that was my point. I just was so wound up by that Israeli story that it reminded me of the fact that it is a question that needs to be asked. I do get frustrated when the overall discourse is less balanced that I would like.

Because there is little analysis of the fact that the practice creates these exact ethical dilemmas--unacknowledged trade offs are being made and the language of "saving a life." To analyse the question we do need to think clearly about this.

I also admit that if I was in a position like some of the posters, I would hypocritically have a hard time of figuring out what to do.
posted by Ironmouth at 12:27 PM on December 21, 2009 [1 favorite]


But I do think that the language counts. It makes it harder to think about what is right and wrong when we use precise language.

I can agree with that, and I typically am pro-specificity in language. I guess my reaction to your words was in part triggered by the fact that they seemed imprecise, given we all must die at some point, no medical treatment (regardless of its efficacy) can 'save' a life. It all simply prolongs life. If the fact that life is not 'saved,' only 'prolonged' argues against the use of organ donation as a treatment, doesn't the same apply to any treatment?

That said, if I had to guess what I thought you were aiming at, it might be acknowledging that some point perhaps a life is prolonged enough to consider it saved, for example to the achievement of the normal life expectancy. I can see plenty of room for difference between "achieving NLE" and "buying a couple of years". In that context, I can sort of agree that many people think of organ donation as a surefire cure, as the be-all-and-end-all of medical treatment, but that it certainly is not. I have known too many little kids who died after a bone marrow transplant, or from complications like graft versus host, to view organ donation as a panacea. Saying this, I am recognizing the discussions about the lack of data, etc.

(Ironmouth, I shouldn't have said you were 'belittling'. That was sort of a heavy-handed, emotional-blackmail-ish, guilt-trippy word to use, and rather inaccurate, too, in retrospect. I'm sorry.)
posted by bunnycup at 12:38 PM on December 21, 2009


I posted about organ donation in the context of brain death previously and I think the full details are important to know to avoid misconceptions.

Organ transplants cost a lot of money. Enormous amounts of money. As in, you could pay for primary medical care for most people from birth to first heart-attack (exclusive) for far less.


Actually, a successful organ transplantation saves money in the long term. Even when neglecting the uncountable benefits (eg return to society and work in many cases) the cost of the transplant ends up being less than the cost of ongoing treatment and management for several years - this is especially true with kidney transplants, where the operation and medication after about a year and a half becomes cheaper than the cost of ongoing dialysis.

Each year, [in Australia] dialysis treatment for a person with end stage kidney disease costs $84,000. The cost of transplantation from a live donor is $75,000, with ongoing treatment for the recipient with medications costing about $11,000 annually. In the case of a deceased donor, the cost of a transplant is $65,000 with ongoing treatment for the recipient costing about $11,000 annually.(source)

The Australian government has just launched a new donor website as part of their campaign to get more donors. The site has a good mythbusting section that I think some people may benefit from.
posted by shokod at 12:43 PM on December 21, 2009


I followed the most recent round of debate about an opt-out donation system here in the UK. There were some religious objections, but by far the most commonly-cited one I heard was pitched as a civil liberties / small government argument from the political right. (Note that the political right in the UK doesn't carry the same religious associations that I understand the American right does).

The key issue seemed to be that a lot of people don't see "presumed consent" so much as they see "presumed ownership". The government is essentially saying that, by default, your internal organs belong to them. In order to keep control of your own body, you'd have to jump through bureaucratic hoops (with the constant perceived risk of administrative cock-ups and costs) and, presumably, have to carry a "non-donor card" on your person at all times until the day you die. Their side of the debate wasn't about organ donation as such - it was about whether the state has the right to force people to go through all this rigmarole simply to keep control over their own mortal remains. It fits into the "the state works for us, we're not property of the state!" battle cry of small-govt lovers everywhere.

So while I'm heavily in favour of organ donation -- I'm a registered organ donor, a registered bone marrow donor, a blood donor and have persuaded others to sign up for all three at various times -- I'm really not sure where I stand on the "opt-in / opt-out" debate. There are undoubtedly scores of people who would be happy to be donors but just never get around to it, but the idea of the govt assuming it has the right to harvest people's organs just doesn't sit well with me.

As a side-debate, how would people suggesting an "opt-out" system for organ donation feel about a similar system for bone marrow donation? Marrow donation (at least, some forms of marrow donation) is no more painful that donating blood, it just takes a few hours instead of 30 minutes. So while it's different in the sense that it happens while the donor is still alive, the worst thing to be said about it is that it's boring. Only a tiny proportion of the population would ever actually be called to donate, and it would certainly lead to a load of lives saved significantly least prolonged. So should the marrow donor registries also be made opt-out?

Please note that I'm NOT trying to draw a false equivalence or conflate two debates here. I'm just curious what people think about this related issue.
posted by metaBugs at 12:57 PM on December 21, 2009 [2 favorites]


If the fact that life is not 'saved,' only 'prolonged' argues against the use of organ donation as a treatment, doesn't the same apply to any treatment?

It absolutely does. The problem is that it appears to me that the standard human reaction to thinking about death is denial. The words "saved" totally scream that to me.

Even rescuers never "save" a life. They prevent an earlier death.
posted by Ironmouth at 1:12 PM on December 21, 2009


As a side-debate, how would people suggesting an "opt-out" system for organ donation feel about a similar system for bone marrow donation? Marrow donation (at least, some forms of marrow donation) is no more painful that donating blood, it just takes a few hours instead of 30 minutes. So while it's different in the sense that it happens while the donor is still alive, the worst thing to be said about it is that it's boring. Only a tiny proportion of the population would ever actually be called to donate, and it would certainly lead to a load of lives saved significantly least prolonged. So should the marrow donor registries also be made opt-out?

Please note that I'm NOT trying to draw a false equivalence or conflate two debates here. I'm just curious what people think about this related issue.


I'm opposed to an opt-out system. The dignity of human autonomy at death is very, very important.
posted by Ironmouth at 1:14 PM on December 21, 2009 [1 favorite]


Even rescuers never "save" a life. They prevent an earlier death.
posted by Ironmouth


What, exactly, is your point? Would you refuse to perform the Heimlich maneuver on a child because it's not making the kid immortal? Do you not look both ways before crossing the street? If a kidney transplant would give an extra ten years to your parent, spouse, or child, would you insist that they decline because hey, it's time to die? What do you want?
posted by Optimus Chyme at 1:29 PM on December 21, 2009 [3 favorites]


Ah fuck, see? Extra credit, Ironmouth. Really above and beyond on this one.
posted by Optimus Chyme at 1:32 PM on December 21, 2009 [1 favorite]


Huh - no one linked to this yet.
posted by Salvor Hardin at 1:50 PM on December 21, 2009


Even rescuers never "save" a life. They prevent an earlier death.

Just because you will lose something doesn't mean you can't lose it sooner.

If you don't believe me, give me all the money in your bank account.
posted by Civil_Disobedient at 2:04 PM on December 21, 2009 [1 favorite]


"Also: (and this is a very distasteful tactic, but...) Americans would be more on board with organ donation if there was some sort of financial compensation. I realize that this gets into a real sticky (pardon) situation ethically, but when you have someone who is in a position (like my uncle recently was) where they desperately need new lungs or they will die within days, ethics kind of go out the window. I don't know, I'm sure I haven't thought this one through. But I have had many families, when they bring up organ donation, ask what they receive in return. When they find out that they don't get anything, they change their minds. Yeah. Ick. I know."

The bold part is the problem of course. It can lead to people actively killing themselves or more likely others for monetary gain.

"Let's also be quite clear: No organ donation (or any other medical procedure) has ever saved a single life."Organ donation prolongs lives, it never saves them."

Or greatly improves quality of life over their natural duration. Lets say you give a newused set of corneas to a 25 year who goes from legally blind to 20/40 vision. Even though they may not even make it to 65 their quality of life is greatly improved and society itself benefits.
posted by Mitheral at 2:13 PM on December 21, 2009 [1 favorite]


My husband does not want his license to state he is an organ donor. He is stubborn, and just doesn't wanna do it.

I say, pass a law that gives people a year to sign up for organ donation, after that they can shove it if they want a donation from anyone else until they have signed up for a year. To be applied to all post 19 years old.
posted by biffa at 2:41 PM on December 21, 2009 [1 favorite]


It makes it harder to think about what is right and wrong when we use precise language.

But you are changing the meaning of the word in order to make it precise. To most of us, the concept of 'saving' does not imply 'saving forever'. That would mean almost nothing -- maybe nothing at all -- could be saved. I suspect you might be tacitly pushing a linguistic campaign from a Christian perspective. If saving is eternal, then the only thing that can save us is god. I consider this a warping of language to serve a political agenda.

I like anotherpanacea's ideas about reciprocity.
posted by painquale at 3:13 PM on December 21, 2009


While I would donate my organs after death, I'm opposed to any presumed consent or opt-out policies for any sort of tissue/blood/marrow/organ donation, or even all these incentives or access to better care. Care should be standard for everyone, not priority for some. You create (or more likely, exacerbate) a class system with those policies. As soon as there are some advantages to organ donation, either financial or medical, then it becomes almost coercive.

All of these processes should be opt-in. Those who do not wish to donate shouldn't be forced to fill out all these papers just to avoid donation. Donation is voluntary by definition. How the heck does "presumed consent" work with that concept?

Want to drive? Go apply for a license. If you want to donate your organs/tissue/etc, fill out the forms.

It's icky to feel like the government or some other entity can presume consent and cut you up for parts or take your marrow or anything like that unless you make sure to opt out. And what about those such as the person whose father donated a kidney and actually lost money over the whole process?

Like it or not, there is a sense of autonomy and of 'this is my body to do with as I wish' in most people, and anything that seemingly transfers that control and sense of ownership over by government decree or similar is just going to creep a hell of a lot of people out.
posted by cmgonzalez at 3:26 PM on December 21, 2009


It was probably the first night my mother had laughed and enjoyed herself since the sudden death of my father five weeks earlier. We were at the house of good friends for dinner and they played a funny movie on their film projector. My younger sister and I fell asleep on the lounge listening to Mum giggle. My eldest brother had returned to his interstate home, and my next eldest brother was out with his best friend. Life had somehow returned to normal.

We got home after midnight and the phone was ringing. I ran to unlock the door to answer it but if cut off. Mum said 'oh, they'll ring back'. She put my sister to bed and sat by the phone. Fifteen minutes later it rang again. She answered and said things like, 'yes' 'where' 'when' 'yes, I will', replaced the receiver and said to me 'your brother has been in an accident'.

The police arrived. They looked relieved when I met them in the driveway and simply said: 'we know'. Then our dinner hosts of the evening arrived to take my sister and I back to their place. Soon after my mother took her car and drove the 20 miles into the city to the hospital where my brother was on life support. Her brother, a doctor at the hospital, met her there.

Later she told me the decision was simple. Seeing her beloved 16yr old boy lying on the bed with just a bruise on his head and tubes pumping his blood she knew that her loss could, for someone, somewhere, be a monumental life gain.

They took his corneas and his kidneys. His lovely hazel eyes that would see no more, his fresh healthy organs that would never again work on their own in his body.

A couple of years later my uncle, the doctor, went against the rules and traced the details of the recipient of my brother's kidneys. It was a man in his thirties with two young children and, at the time, only weeks to live. My uncle spoke to the man's doctor and discovered that he was now living a full and healthy life. My mother's decision had saved that man's life and given his children their father.

Her decision saved me too, in a sense. My deep and long lasting grief turned into a life changing joy when I realised that part of my brother was still alive and on the earth with me.
posted by Kerasia at 3:27 PM on December 21, 2009 [17 favorites]


In my State, when applying for a drivers licence, you tick a box and you have organ donation 'enabled'. Pretty simple, and has boosted recorded donors immensely.
Personally, I think anyone objecting to organ donation is a loon.
posted by wilful at 3:33 PM on December 21, 2009


Yeah, and your liver might end up going to someone who voted for Bush. Better not risk it.

nope, not that. the problem is, like the blind surveys of the identical résumés sent out first in the names of Matt and Martha, and then Lakeisha and Jamal, I think it's safe to assume that, all donor cards being equal, Lakeisha and Jamal will be unequally harvested, and Matt and Martha will benefit unequally.
posted by toodleydoodley at 3:46 PM on December 21, 2009 [1 favorite]


I am completely perplexed that anyone cares what happens to the chunk of meat that their body becomes after they die, even if they are religious. Are there really people who believe that they will be called out of their graves like zombies when the "resurrection" happens, and will have problems operating in heaven if they don't have a liver? Really?? The miracle that they imagine will happen when they're revived will bring them back to life for just a second before they die all over again from lack of a heart? I just don't get it.
posted by TochterAusElysium at 3:53 PM on December 21, 2009 [1 favorite]


What, exactly, is your point? Would you refuse to perform the Heimlich maneuver on a child because it's not making the kid immortal? Do you not look both ways before crossing the street? If a kidney transplant would give an extra ten years to your parent, spouse, or child, would you insist that they decline because hey, it's time to die? What do you want?

First, let's set aside some far-out cases there. I think there would be no reason to do the Heimlich. Low-cost, high gain.

What if someone is waiting on a kidney for a long time, they come up and are entitled to the kidney, but it might only give them 18 months, and others at the bottom could live 10 years on that kidney? The first party waited in good faith. But the resource is not lenghtening life as it could, optimally.

The intense focus on extending the last few months of life a few more months creates these ethical issues. It isn't just transplants, health care dollars are expended to prolong the last few weeks of life far more than is optimal.

Yet one cannot ask another to give up a chance at life for one more day, even if less overall good comes from the use of that health care resource in that way.

Instead ethical discussions about end of life care need to be the norm.
posted by Ironmouth at 3:54 PM on December 21, 2009 [1 favorite]




Instead ethical discussions about end of life care need to be the norm.

Interesting that you say that after two posts that seem designed only to stir people up. Yes, ethical decisions about end of life care need to be the norm. No, 'organ donations don't save lives', is not the way to start those ethical discussions.
posted by twirlypen at 6:42 PM on December 21, 2009


No, 'organ donations don't save lives', is not the way to start those ethical discussions.

I think it points out a powerful point--that we refuse to answer these questions as a society and use the terminology we have to overemphasize the benefits of organ transplant.

But I stand by my assertion that the default langauge represents an unacknowledged position in this debate. I've made that assertion before in regards to other medical issues.
posted by Ironmouth at 7:26 PM on December 21, 2009 [1 favorite]


Personally, I like Canada's policy of giving organs to the people who will most likely use them for the longest period of time; and over a certain age, absolutely no shot at getting an organ.

Two and a half years ago, my best friend died for want of an organ transplant. He was older and had other health complications. He was also the first person in line to tell you that he would never want an organ if it meant taking it at the expense of some sixteen year old with her life ahead of her. Terrible to lose my friend, but as someone with personal experience of this policy in Canada, I have to say - I like this policy too.
posted by arcticwoman at 7:26 PM on December 21, 2009


Like it or not, there is a sense of autonomy and of 'this is my body to do with as I wish' in most people, and anything that seemingly transfers that control and sense of ownership over by government decree or similar is just going to creep a hell of a lot of people out.

Honestly? They need to learn to deal. I understand that it *seemingly* transfers control to the government but in actuality it does not affect their lives in any way, shape or form.

I have somewhat of a thing for moral dilemmas but I don't think this even qualifies as a dilemma. On the one hand, tens of thousand of lives. On the other, some people thinking the government's out to get them when it's not in any way increasing control over them or changes their lives one bit.

(And you know, probably those people will think that anyway, regardless of whether there's an opt-out organ donation program.)
posted by shaun uh at 8:49 PM on December 21, 2009


Fascinating thread, thank you...
posted by agregoli at 9:20 PM on December 21, 2009


The fascinating thing to me is the idea of rights over corpses and the belief of some apparently non religious people that there is some continuity between the living version of them and the dead one.

Failing that however, what kind of rights can any living person claim to a corpse? Are they property rights automatically acquired by the next of kin?

The idea of dead bodies as property seems only slightly less disturbing than living ones. Alive, we don't have property rights to our body, we have some kind of inalienable human rights. But dead?

I'd rather see corpses as something not able to participate in normal rights regimes. No one can 'own' a body, including the government, and that means they're not taking it away from anyone either.

Practically I do think that the culture I live in requires the government to recognize and accept a range of burial and death practices. But if we could get away from the discourse of ownership and rights, I think that would be a good thing.

I am an organ donor but the one thing that ever gave me pause about this was learning that doctors, overwhelmingly, choose not to be donors. The most common explanation given is that they don't trust that they would receive equally intense and drastic life saving measures if other doctors had an incentive to keep their body in a certain usable state for donation. If doctors don't trust each other/themselves, why should I? But then, nurses, who also get to see a lot of life saving attempts up close, are donors at exceptionally high rates, so that's reassuring.
posted by Salamandrous at 3:42 AM on December 22, 2009


I am an organ donor but the one thing that ever gave me pause about this was learning that doctors, overwhelmingly, choose not to be donors.

Where did you get this information? Certainly most of the health care workers I know (including myself) are donors, and I also have colleagues who have benefited from transplants. There is a positive outlook towards donation where I work and I don't think we are that far from the norm.
posted by TedW at 4:26 AM on December 22, 2009


I think it points out a powerful point--that we refuse to answer these questions as a society and use the terminology we have to overemphasize the benefits of organ transplant.

I think you're being incredibly dishonest. Yes, there are uses of "save" that imply perpetuity. A relief pitcher "saves" a win, and that win will never become a loss. Jesus "saves" your soul, and your soul will not be lost.

However, these are exceptions, and the everyday use of "save" implies a prevention of an immediate fate without guarantee of that fate eventually happening anyway:

- When you "save" a document on a computer, you prevent its automatic deletion without guaranteeing that the document can't be deleted later.
- When Superman "saves" Metropolis, there's no guarantee that it might not be threatened again and possibly destroyed.
- Steve Jobs "saved" Apple, and returned it to profitability. Apple's going strong now, but no company lasts forever.
- If you push someone out of the path of a moving car that they didn't see, you just "saved their life". They will surely die later anyway.

All of these are extraordinarily common uses of "save," and it's no stretch that a timely organ donation will extend the life of the recipient by 20-60 years depending on their age. If they would otherwise die in a year, you have "saved" 19-59 years! That is easily "saving their life."

I really would like to know what your agenda is, that you're really so against the statement "organ donation saves lives." If it saved even 2 lives, it's a true statement, and it saves a lot more than that. They're not just stuffing kidney after kidney into the abdomen of terminally-ill alcoholic 80-year-old rich white men, you know.
posted by explosion at 6:07 AM on December 22, 2009


In Ironmouth's defense, there's a lot of evidence that framing moral questions in terms of 'lives saved' short-circuits our capacity to compare costs and benefits. That said, Ironmouth, I think you could have done a better job of framing your point up front.

In a very real sense, thinking about the *system* of health care provision in terms of saving lives can prevent us from seeing some of the obvious things he's talking about, even though we probably ought to think of our individual actions in that way. The comparison between organ donation costs versus, say, lives preserved from malaria with mosquito bedding in Africa is a pretty powerful one, and if you're just comparing raw numbers of lives rather than quality-adjusted life years, you can quickly come to some conclusions that are probably not justified by the more complete view of the facts. So yeah: Quality Adjusted Life Years for the win.
posted by anotherpanacea at 7:35 AM on December 22, 2009 [3 favorites]


They're not just stuffing kidney after kidney into the abdomen of terminally-ill alcoholic 80-year-old rich white men, you know.

No, actually, I don't know. I mean, I didn't presume that particular scenario, and think it's unlikely. But no, I don't know. We don't know. The question of organ donation is significantly absent from the public discourse. It shouldn't be. It should be something we can talk about openly.
posted by jock@law at 2:13 PM on December 23, 2009 [1 favorite]


I am grateful that due to organ donation, someone I care about a lot is not blind. His life may not have been "saved" or "extended" but thanks to the donation of a couple of corneas, his quality of life has been sustained at a level of sightedness that he otherwise would have lost. He still designs websites, writes & draws comics, reviews media and plays Playstation. He can still drive, fight zombies and hang out on New Years Eve on his couch with some friends watching special effects laden sci-fi. He's been able to see Avatar in all it's 3D glory. The may not have the same gravitas as a terminally ill patient receiving a life-saving kidney transplant, but as far as I am concerned it's just as valuable.
posted by goshling at 4:27 PM on January 1, 2010


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