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February 23, 2003 12:39 AM   Subscribe

Organ donation has become a hot topic on Me Fi lately. Unfortunately, this thread has not spawned the best discussion. But the ethics of organ tansplantation can become difficult. Do donors have the right to specify who gets their organs? If they do, what does that imply for living donors; in other words, are you really volunteering to donate that kidney to your brother? And should we have an opt-in or opt-out system? Most religions approve of organ donation; even Jehovah's Witnesses that do not accept blood transfusions. And of course, the US government is involved, for better or worse. Not everyone thinks organ donation is good. More links here and here.
posted by TedW (42 comments total)

 
I am going to bed now; I hope someone finds this worthy of comment which I will address later. On a related topic, does anyone know what Jessica Santillan's original diagnosis was? That information is key to knowing what her best and worst case scenarios were. My thoughts are with her friends and family.
posted by TedW at 12:45 AM on February 23, 2003


Opt in....my sentiments exactly as my words in the previous thread attest to.
posted by SweetIceT at 12:50 AM on February 23, 2003


I think an opt-out system would be a good idea, actually. Organ donation is obviously the right thing when you sit down and think about it rationally, but it is somewhat unpleasant for many on a visceral level. Nobody wants to think about their organs being harvested out of their dead bodies (or, even less, those of their dead loved ones). It's not surprising to me at all that many people have a gut reaction against it if they've never actually thought about it before. An opt-out system would catch the people that really don't care one way or the other (of which I'm sure there are many) and would also stand a good chance of making organ donation an accepted moral norm. Government would be sending a strong message that its the right thing to do, and not merely an extravagant gesture of selflessness.
posted by boltman at 1:44 AM on February 23, 2003


also it would remove the barriers to becoming a donor. in texas they used to ask when you got your driver's lic. then they stopped, and I think you have to register somehow, but, while i would be more than happy to donate, i'm not entirely sure how.
posted by rhyax at 1:52 AM on February 23, 2003


Nobody wants to think about their organs being harvested out of their dead bodies

Huh? I do. I love the idea; I've been a donor (I carry a card, and it's marked on my driver's licence) as long as I've been aware of the concept. Personally, I'm horrified by the idea of my body not being used for organ donation, or whatever else it might be good for, once I'm dead.

I think I like the opt-out system, too, with the caveat that concerned relatives should have some say in cases where no preference was given. It would be pretty horrifying if the default 'yes' were to be enforced in direct opposition to the wishes of, say, grieving parents.
posted by sennoma at 1:53 AM on February 23, 2003


... while i would be more than happy to donate, i'm not entirely sure how.

Go here and get yourself one of these. The same site has answers to lots of other common questions.
posted by sennoma at 2:03 AM on February 23, 2003


My best friend signed my donor card more than a decade ago. Her mother died while waiting for a donor heart and lungs. Then my friend died in 1997 from a liver condition that could've been alleviated via a donor organ. I have long advocated organ donation.

I was recently in a debate with someone who asked what I would do if I was in a position to have to choose to donate the organs of one of my children. And I affirmed that under no circumstances would I fail to donate -- because under no circumstances would I fail to accept a donation if one of them needed a new organ. And that's the crux of it to me: it is a morally indefensible position to be willing to accept but not be willing to give.

The problem is that it's a cold, terrible thing to say that to a family that is grieving and emotionally overwhelmed, but it's the one point that I've found will make someone rethink their position on the issue. This is why I have advocated an opt-out system for all adults. It wouldn't alleviate the situation for parents of dead children, but it would prevent, I think, a lot of situations where emotion overrides logic with the deaths of adults and that, in turn, would save lives.
posted by Dreama at 3:52 AM on February 23, 2003


TedW: According to Jesica's Hope Chest, a charity founded originally to fund this heart surgery, Jesica Santillan was diagnosed with restrictive cardiomyopathy at the age of 12.

I support an opt-out system of organ donation as well, as long as the opportunity to opt out is clearly presented to everyone at some point (and preferably several). That way, we can be sure that anyone who doesn't want their body parts cut up and distributed for the good of society won't be subjected to that, and that every organ donation is therefore truly voluntary.

I remember getting my Selective Service signup card in the mail back when I was 18. There was a tiny little notice near the fold with a P.O. box address to write to get more information on your Selective Service rights and obligations. That was the government's way of letting you know that you can get conscientious objector status. I would want opt-out information for organ donation to be a lot more apparent, and more than just pro-forma fine print. I second sennoma's caveat as well.
posted by skoosh at 5:55 AM on February 23, 2003


I have a hard time understanding why anyone that's ever thought about death for a few moments would not choose to be an organ donor.

unless you happen to live in Dr David Wainwright Evans's world, where the first thing a doctor checks is not your pulse but your wallet.
posted by mcsweetie at 6:50 AM on February 23, 2003


Opt-in. I've read that Robin Cook book... OK, I haven't, but I read the back cover--and it's creepy.
posted by Fabulon7 at 8:33 AM on February 23, 2003


I have a hard time understanding people who refuse to donate, or allow a loved one's organs to be donated, when it is not for religious reasons. I feel much better knowing that after I am gone, part of me will live on and be useful. When my grandma died, someone ended up with her corneas. That makes me feel better about her death.

I know grief is not logical, but the "grieving relative syndrome" mystifies me.
posted by kayjay at 8:37 AM on February 23, 2003


I have a hard time understanding people who refuse to donate, or allow a loved one's organs to be donated, when it is for religious reasons.
posted by jaronson at 9:15 AM on February 23, 2003


Uh... that last comment...I'm an idiot. It helps to read all of the links in a post before commenting. Thanks, TedW. Good post.
posted by jaronson at 9:31 AM on February 23, 2003


To give a perspective that I haven't seen here or in the thread from hell: My parents are nationalized immigrants who love this country but harbor an abiding mistrust for institutions like the government and the medical establishment. Most often, this manifests itself purely in humorous ways. My dad, for instance, believes that pretty much all maladies are traceable to fiber deficiencies and tends to prescribe a treatment of beans for everything from backaches to the common cold. My mom generally jumps in on whatever ethnic medicine bandwagon is popular at the moment, the worst of which was the completely ineffectual and vomit-tasting Noni juice, which about poisoned my dorm refrigerator when she sent it to me my freshman year of college. Occasionally, when I visit home, I wince to find Emulsified Norwegian Cod Liver Oil where the butter should be.

Yes, my parents are paranoid. Not clinically -- after all, my dad didn't hesitate to trust the hospitals when he was diagnosed with prostate cancer; and they do insist on regular medical and dental checkups for all of us. But their ... over-cautiousness has an occasional potentially serious side. Neither of them is an organ donor, chiefly because they fear that if anything happened to either of them, and a doctor had to choose between 1) making undue exertions to preserve their life for a little while and 2) being perhaps less of an obstacle to their death than he could in order to rescue their precious organs for another more deserving vessel, he might be tempted to make the unethical choice.

Paranoia of the highest order? Perhaps, but it's real, and deeply felt. They don't believe that a system capable of producing the Tuskegee Experiment is above allowing them to die in order to seize their organs. And whether that opinion is backwards-thinking or unproductive, I think it's both perfectly fair and perfectly understandable. I also think that my parents could eventually be prevailed upon to become organ donors, if they ever managed to meet a doctor who they didn't feel was trying to swindle them (like the dentist who claimed to find four cavities in my dad's seemingly perfect teeth a year after another dentist had pronounced him free of them, and a year before a third opinion confirmed that finding), who told them it would be very good of them to do it, and that the chances of the designation being abused would be next-to-nothing.

I imagine any tendencies in this direction would be exacerbated in the case of a family whose trust in the hospital had already been shaken by such an unhappy accident as befell the Sandrillans. And then, for the hospital to ask if they'd consider donating their daughter's organs just as they are holding out the last hope for her survival? And finally, for the hospital to remove the girl from life support after the family had asked for a second opinion on her brain dead classification? Even reason could understandably bend towards paranoia. This family could well have feared that the hospital, which had already been negligent of the life of their daughter, had decided that this little immigrant girl was not worthy of the cost and effort necessary to keep her alive, and that her organs were better disposed in the body of another.

How do you answer mistrust like that? How do you assure people beyond a doubt that a hospital is going to act only in their best interest? And can you blame those who harbor such sentiments? I don't think there are any black-and-white answers to these questions.
posted by grrarrgh00 at 10:10 AM on February 23, 2003


Well, the issue of premature harvesting didn't apply to Jesica of course- she was brain dead (while I understand the Santillans' desire for a second opinion on that, I don't think there's any realistic chance that the Duke doctors flubbed that call too). But grrarrgh00 is right that there's no way to answer mistrust like that- because I think that, in rare situations, doctors may have made calls like that. Hippocratic oath aside, I wouldn't be surprised if a doctor had a known organ donor as a patient, and medically knew that the patient had a 1% chance of survival if given some last ditch treatment that would, for timing or some other reasons, make organ donation impossible, and then decided to spare the organs for some other soul at death's door. Like most medical ethics questions, this is hard to answer (I would say give the treatment anyway), but I think that its probably happened. Do you know any doctors that would turn a blind eye to "First, do no harm" in this situation, TedW?
posted by gsteff at 10:29 AM on February 23, 2003


I think an opt-out system for adults would be excellent, though I agree that the information about how to opt-out needs to be made clear and widely available. I know that there are a lot of people like my husband, though, who care so little about what happens to their bodies after they're done with it, that its difficult to even get them to state a preference either way. If donation were automatic in cases like that, then the family wouldn't be left with having to make the decision for the person after death.
posted by thorswitch at 10:46 AM on February 23, 2003


I'm an organ donor (well, ok, not yet, far as I know). It says so on my (WA) driver's license. I'm curious, though, about how legally enforceable this is. If someone's driver's license said 'organ donor', but there was no other evidence of their wishes, and their spouse, for example, objects, can the spouse's wishes override those of the (potential) donor?
posted by normy at 10:46 AM on February 23, 2003


Donor cards are a good thing.

I tend to doubt that people coming from Mexico would have them though, unless you created Mexican donor cards too.

And I tend to doubt they would have helped with Yesica considering her medical condition after two transplants.

I do know that if you match your blood types in the first place, you increase the likelihood of a live patient who can fill out donor cards later.
posted by anser at 10:58 AM on February 23, 2003


In CA, you fill out a little (card-size) form that says "This is a legally binding document" and have someone else sign it. The form has options like "I choose to donate the following organs: (list), all organs, body, I choose not to donate; I choose to donate for transplantation; medical research; both (check)." You fill it out and put a sticker on your license and carry the form with you.

As for the other thread, true, it had some hateful comments, and some distasteful ones too, but I think maybe it would have been better to continue the discussion there and mend it by discussing politely. Hey, that way we could go for the record number of comments in a thread! (What is it now?)
posted by azazello at 11:03 AM on February 23, 2003


can the spouse's wishes override those of the (potential) donor?

Yes. Which is why there is usually a pamphlet given along with your donor card (whether it's on your license or separate), advising you to discuss your desires about organ donation with your family, so that they won't have to make that decision at a difficult time, because they already know what you'd want.
posted by biscotti at 11:05 AM on February 23, 2003


Thanks TedW. The previous thread, if nothing else, highlighted to me how little I know about this. I haven't the heart to donate any more commentary, but wanted take a moment and thank you for the links.

I have some reading to do.
posted by cedar at 11:49 AM on February 23, 2003


Hey, that way we could go for the record number of comments in a thread! (What is it now?)

It's much higher than you'd think, and I'm pretty sure Matt doesn't want you going there...

All you people who "have a hard time understanding" need to get out of your own heads (filled with smug certainties as they are) and read and reread grrarrgh00's comment till you figure it out. I'd be against mandatory (or sneaky opt-out) donating anyway (people have a right to do what they want with their own bodies, even if, say, their religious feelings don't make sense to you in your infinite wisdom), but the perfectly valid fears of decisions doctors might (in their infinite wisdom) make balancing your right to your dwindling life against somebody else's right to your valuable organs tip the scale quite heavily. (Similarly, the "right to die" so many people want slides imperceptibly into euthanasia; check out the situation in the Netherlands.)

Oh, and that other thread is a sickening mess, valuable only in that it reveals a great deal about the people who commented in it.
posted by languagehat at 11:52 AM on February 23, 2003


Nobody wants to think about their organs being harvested out of their dead bodies (or, even less, those of their dead loved ones).

By all means, get my organs when the blood is still pumping through them. Though with my brain it doesn't matter. That's going to Duke for their depression study (no joke), and it doesn't matter how dead it is when it goes.

I'd feel privileged to be able to give someone a chance at life or relief from suffering with my death. I mean, we all have to die someday, why not do some good with it?
posted by beth at 11:54 AM on February 23, 2003


FYI, the direct link to have an organ donor card (via sennoma's links) mailed to you for free is here. A PDF version is available here.

And thanks for starting a sane thread on the topic, TedW. Nicely done.

A note: If you check "entire body," you are going to be used as a cadaver for research, and your organs cannot be donated. For this reason, I've checked "any organ/tissue" instead of "entire body," because I'd rather have the direct impact of my organs going to individuals rather than my body being used for research. (Far less creepy to think about, too, although that didn't influence my decision). From the HHS page on organ donation:

"Total body donation is an option, but not if you choose to be an organ and tissue donor. If you wish to donate your entire body, you should directly contact the facility of your choice to make arrangements. Medical schools, research facilities and other agencies need to study bodies to gain greater understanding of disease mechanisms in humans. This research is vital to saving and improving lives."
posted by UKnowForKids at 11:55 AM on February 23, 2003


Donor cards are a good thing. --anser

I agree. We have the technology, we might as well do some good with it. On the other hand...Remember this scene from Monty Python's The Meaning of Life?
posted by jaronson at 12:01 PM on February 23, 2003


beth, senoma: I'm an organ donor too, but my immediate completely irrational reaction the first time I was asked to do it, before I had ever given it a second's thought in my life, was "hell no!" Then the rational part of my brain kicked in and said "you'll be dead, you won't need them, idiot" and I shrugged and checked the little box. But I just wonder how many people start off with the same reaction and never stop to consider that it makes no sense.
posted by boltman at 12:39 PM on February 23, 2003


Thanks sennoma. I went to that site, you can print a card on normal paper. Unfortunately I don't have a printer, and would prefer a real card anyway, so I called the HRSA info center (where they would send you a card) it is closed for the weekends and non business hours. So I will have to call them at my lunch break from work. Needless to say the process could be easier. This site seems to make it seem like the card is less important than your family knowing though, so maybe that's why not much effort has been made in making it easy to get.
posted by rhyax at 12:46 PM on February 23, 2003


I think the key words here is "dead". Read the great links that TedW provided on the technical aspects of organ harvesting. Your brain or the brain of your child, may in fact, not be dead. Further, in doing the brain death test (which is ill defined), doctors may cause additional and irreversible brain damage. The link cites numerous cases of transplant/harvesting teams making decisions that were good for the health of organs to be harvested, but ensured that the brain died.

Guess I'm just not that trusting of whatever doctor ends up taking a look at me to see if I'm brain dead. I think I'll take a big pass on donating my organs.
posted by zia at 12:58 PM on February 23, 2003


i have my little donor card signed and have always supported the idea, but a few years ago i had the opportunity to see a fully harvested corpse and let me tell you it inspired in me an enormous will to leave this earth much the same way i came into it - fully freaking intact, thank you very much. it was all i could do not to tear up my donor card and spend my days praying for immortality. in the end i kept my head (yah, no pun intended) but i did revise my donatable organ list to just certain items, not a free for all. so for now i'm against presumed consent - don't take from me unless you have my permission and don't take more than i've stated.

i'm happy that after my death i may be able to help someone else live a longer or better quality life but i won't pass judgement on those who choose to not donate. coming to terms with our mortality is a damn hard thing to do and not all of us do it the same way.
posted by t r a c y at 1:00 PM on February 23, 2003


Altho my license does state that I do indeed consent to being an organ donor, I really don't see the point as it is the family of the deceased that makes the final decision, in this state anyway. I am not sure my family sees donation the same way I do-and a lot of it is because that they also feel that a doctor may not work as hard to save a prospective organ donor.
posted by konolia at 1:05 PM on February 23, 2003


check out the situation in the Netherlands

Link? Info? My Dutch friends were very happy with the way their terminally ill grandmother chose to die: in her own bed, surrounded by family, with dignity and warmth. It was Grandma's idea and her show from start to finish: no one was getting rid of her. Anecdote != evidence, I know, but that's been my only contact with the Dutch system. I haven't heard of any "slide into euthanasia". As a supporter of the right to die as one chooses, I'd be interested to read about flaws in current systems.
posted by sennoma at 2:13 PM on February 23, 2003


I'm sure I'll get flamed for this, but I have no intention of being "harvested" once I'm dead. By the same token, I wouldn't accept a transplant, even if it meant saving my life. I have reasons which are my own, but basically, once I meet the criteria for Harvard brain death, just trundle me over to a fire, thanks.

I think it's great that other people have the courage of their convictions and are willing to have part of them living on, after the rest of them is walking the path to the next life, or Valhalla, or Heaven, or whatever they believe, but I'm just not one of them.

On the other hand, I'm not a completely selfish git, I donate blood every 6 weeks or so, because I'm o+, and the blood bank always needs universal donors.
posted by dejah420 at 2:52 PM on February 23, 2003


Do you know any doctors that would turn a blind eye to "First, do no harm" in this situation, TedW?

Although I do know some physicians that are an embarassment to the profession, I know of none who would fudge declaring a pt. brain dead in order to get their organs. It would be difficult to do, as most donors are in the ICU with a number of experienced professionals constantly nearby; someone would quite likely question any inappropriate care. What does happen is that potentially usable organs go unused while the ICU team makes certain that the patient truly is brain dead (which is not the same as being in a coma). There are some who argue that it is appropriate to use patients in a persistant vegetative state as organ donors, but I think they will have a tough time convincing most of the medical community.

posted by TedW at 3:18 PM on February 23, 2003


I haven't heard of any "slide into euthanasia".

A study came out a little while ago indicating that people were being euthanised without proper consent in the Netherlands under their euthanasia laws. The last I heard was that the study and its interpretations were flawed, and that it greatly exaggerated, if not outright mis-stated, the facts. However, as usual, you don't hear about the clarification of the study, just the study itself. See here for an overview.

I find it really hard to believe that people buy into Coma type medical thriller reasoning against organ donation - while there are some lousy medical professionals out there, there's no reason doctors would fake someone's brain death or kill them outright just to get their organs.
posted by biscotti at 4:27 PM on February 23, 2003


>>I find it really hard to believe that people buy into Coma type medical thriller reasoning against organ donation - while there are some lousy medical professionals out there, there's no reason doctors would fake someone's brain death or kill them outright just to get their organs.<<

Maybe I'm a cynic, but I tend to believe that if you wave a sufficiently large pile of cash around you can find someone willing to do just about anything. In the US, the pile of cash would have to be very large indeed, because you would have to subvert the donor's doctor, the ICU staff, and the donation routing procedures. In the US, it probably doesn't happen.

On the other hand, if the doctor were in, say, China, and the prospective donor were, say, a convicted criminal, and the prospective recipient were the daughter of a leading Party official... the pile of cash might not need to be very large at all.

I'm an organ donor and a blood donor, and I hope other donors will be there if I ever need a transplant or a transfusion. I've got better things to do than pass judgment on people who make different decisions.
posted by kewms at 5:26 PM on February 23, 2003


While I'm personally 100% supportive of organ donation, I think that culturally, we're probably still years away from accepting an "opt-out" approach--i.e., where donation on death is the norm.

I think the major challenge that's still faced is, in fact, cultural. A "public education" effort that got folks to look at their still-functioning organs as a resource to be routinely bequeathed to society would do an enormous good. Not only would a world where donation is the norm save drastically more lives, but it would circumvent most of the "black-market" nightmare scenarios that crop up in bleak sci-fi (and rightly scare us all).

Things like this have certainly happened before--think MADD, civil rights, and any number of other social changes that are basically attitudinal, and have been turned around by the right people making the right points.
posted by LairBob at 5:34 PM on February 23, 2003


if someone's driver's license said 'organ donor', but there was no other evidence of their wishes, and their spouse, for example, objects, can the spouse's wishes override those of the (potential) donor?

In Australia, the organ donor tick on a drivers license is merely an indication that you wish to be a donor and your next of kin has the final say. If you want to be an organ donor, you need to discuss it with your family (including anyone who may be asked) and make sure that they know your wishes.

I wonder how many people would be saying that they are not prepared to donate their organs if a member of their family was slowly dying while waiting for a transplant to become available?
posted by dg at 8:57 PM on February 23, 2003


I was 100% in favor of organ donation until this case. An average of 16 Americans a day died waiting for a transplant while this ILLEGAL alien received 2.... and her family refuses to donate........ what's wrong with this picture? The only thing she should have received is deportation papers! Will I donate... forget about it!!!
posted by dancersid at 10:24 AM on February 24, 2003


I was 100% in favor of organ donation until this case. An average of 16 Americans a day died waiting for a transplant while this ILLEGAL alien received 2.... and her family refuses to donate........ what's wrong with this picture? The only thing she should have received is deportation papers! Will I donate... forget about it!!!

Um, according to more recent reports:
1: Her family had volunteered her organs but were turned down due to multiple organ failures and a high level of anti-rejection drugs in her tissues.
2: The family desired an independent autotopsy probably pending legal action against Duke. This removes organ donation as an option.
3: By the time corneal donation was brought up to the family the medical center had denied an external second opinion and was removing life support.
posted by KirkJobSluder at 10:47 AM on February 24, 2003


And let me put it this way, if one of my loved ones died of suspicious circumstances in a hospital, damn right I would consider a complete post-mortem in order to collect possible evidence for criminal or civil action to be more important than organ donation.
posted by KirkJobSluder at 10:53 AM on February 24, 2003


The family desired an independent autotopsy probably pending legal action against Duke. This removes organ donation as an option.

I know I am a bit late to my own post, but I have to mention that the above is a popular misconception about organ donation. Although it varies from case to case, I have seen organs donated in a number of patients that went on to have autopsies; if you consider how many organ donors die of gunshot wounds to the head or head injuries sustained in motor vehicle crashes you can see why organ donation and medicolegal autopsies have to co-exist.
posted by TedW at 4:09 PM on February 25, 2003


Wink Martindale's song covers this topic in a unique way.
posted by snez at 11:28 AM on March 3, 2003


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