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Wednesday, March 24, 2010

Why don't people agree to donate their organs? 


I renewed my driver's license this morning at the Lawrenceville (NJ) DMV and, as has been my custom, I agreed to be an organ donor in the event of my untimely demise. Here in New Jersey they specifically ask, so you cannot skate past the question by leaving a box in a form blank, and in any case I would consider it a mitzvah if I saved or improved a life post my own mortem.

Anyway, curiosity got the better of me and I asked the nice DMV woman how many people agreed to become organ donors in a typical day, and she said "fifty to sixty." Out of how many license renewals? "Around 300."

WTF?

Assuming the Lawrenceville facility is typical -- and it seems damned typical -- fewer than 20% of New Jerseyans agree to become organ donors. In other words, they would rather that somebody else die or live in pain and misery than give up any of their body parts after they have died.

I'm going to say that this is the most disappointing thing I have learned about my fellow Americans in a long time. I had no idea that even in New Jersey so many people were so churlish.

Since the odds strongly suggest that many of you, my otherwise respected readers, have also refused to donate your organs, can you at least do me the favor of explaining why?


49 Comments:

By Anonymous astonerii, at Wed Mar 24, 11:48:00 AM:

Because in order for most organs to be worth anything, they have to be yanked out within minutes of death. How many people have you heard of that have come back from the dead in the morgue. Once the organs are gone, there is no hope. In my case, I tend to figure my organs are in pretty poor shape anyways.  

By Blogger TigerHawk, at Wed Mar 24, 11:53:00 AM:

I've never heard of anybody coming back from the dead in the morgue. Not in modernity.  

By Blogger Stack Trace, at Wed Mar 24, 11:57:00 AM:

I and everyone in my family are marked for donors. It is a (tiny, slightly creepy) point of pride.  

By Anonymous Anonymous, at Wed Mar 24, 11:59:00 AM:

They can have it all except for my Penis, just in case I need that later!  

By Anonymous Anonymous, at Wed Mar 24, 12:33:00 PM:

When my estate can get a percentage of the gross of any transplant operations done using my organs, then I will gladly donate.  

By Anonymous Anonymous, at Wed Mar 24, 12:46:00 PM:

I lived in the UK during Mad Cow disease. The last time I checked I am forever banned from donating organs, tissues, and blood.  

By Blogger Semper, at Wed Mar 24, 01:23:00 PM:

Not only am I registered as an organ donor, I have gone the extra mile and purchased a motorcycle. ;)  

By Blogger Bomber Girl, at Wed Mar 24, 01:45:00 PM:

Anon 12:46 - you may want to re-check the restrictions. It appears from various websites that this may no longer be the case and that "indefinitely deferred" due to living in Europe during the 80s has been modified. But I am no expert.  

By Anonymous Anonymous, at Wed Mar 24, 01:53:00 PM:

Imagine the following hypothetical:

It is 2015 and you have been seriously injured, say, in an auto accident. Others in your situation--massive internal injuries--die approximately 70% of the time. The costs to save you will be extraordinary and your private insurance company, if there are any left, has alerted the hospital that they do not plan to pay for extraordinary measures. And, if we have a single payer system by then, the government has run your life's value through their checklist and determined that you have not earned enough "points" to be worth saving.

Your doctors have a choice: devote extraordinary resources and work exceptionally hard to save you, in which case you have a 30% chance to live a debilitated but perhaps still productive life, or harvest your organs in "mercy" and save the life of someone down the hall of whom they have grown fond.

Add in the situation that you alluded to the other day--the politically connected waiting lists for organs--and it makes the choice NOT to donate that much easier.  

By Blogger TigerHawk, at Wed Mar 24, 01:59:00 PM:

I suspect most of the risk-averse scenarios described here are improbable, but in any case would diminish in probability if there were a plentiful supply of donated tissue. So the shortage drives the pressure on the ethics. There are various ways to increase supply, but I think the most libertarian is simply to say that if you do not choose to donate your organs ex ante, you are ineligible to receive an organ donation until the needs of all people who did agree to be donors have been met. That is, prospective donors would have an absolute priority on all waiting lists. Then, the DMV could pose the question as follows: "Do you choose to donate your organs if you die, or do you choose to be ineligible to receive donated organs if you need them while you are alive?" Anybody got a problem with that rule?  

By Blogger TigerHawk, at Wed Mar 24, 02:00:00 PM:

Addendum: With exceptions for people who are barred from donation for some reason outside of their control (the "mad cow" rule, which was imposed post hoc, would be an example).  

By Anonymous feeblemind, at Wed Mar 24, 02:03:00 PM:

The fear is that you may end up donating your organs before you are through with them.  

By Blogger The Machiavellian, at Wed Mar 24, 02:15:00 PM:

It is because the government is asking the question.

I would bet that if a church for instance, held an organ drive, people would sign up in droves.

My pat answer to government is no. I suspect many think the same way.  

By Anonymous Anonymous, at Wed Mar 24, 02:17:00 PM:

I simply do not trust the individuals in the medical -industrial complex to correctly pronounce my death if they can make more money with my harvested organs. Surely doctors are subject to the same temptations that lesser mortals are.  

By Anonymous Anonymous, at Wed Mar 24, 02:18:00 PM:

I'm a donor as well, but have not been successful at persuading my children to sign up.

One of my daughters, speaking for the group, says they are convinced that emergency care is withheld from donors in extreme cases and that hospitals begin scooping out your organs before you are clinically dead. I answered that these things only happen in China, but she responded that she thinks we are becoming China, at least in our form of crony capitalistic authoritarian government, and so (for her at least) my argument went down in flames.

I'll keep trying.  

By Blogger Elise, at Wed Mar 24, 02:20:00 PM:

I cannot donate my organs for medical reasons.

I kind of like the idea of making non-donors ineligible to receive organs. (We'd also have to make exceptions for children.) Of course, that's easy for me to say since I can't be a donor. I do wonder, though, who would administer such a regulation.  

By Anonymous feeblemind, at Wed Mar 24, 02:21:00 PM:

It is possible to now have virtually everyone become an organ donor.

Under Demcare, the law can just be amended requiring you to become an organ donor if you want access to health care.

There you go TH. Problem solved.  

By Anonymous Anonymous, at Wed Mar 24, 02:36:00 PM:

Because the default option on the form is "do not donate".

Think of the way the option is currently framed. First, you have contemplate your own demise, and then dismemberment. No thank you! The negative emotional associations thus mustered will not generate enough mental energy to change the status quo.

If the default option for organ donation were yes, you would pick up at least 25% more volunteers on sloth alone, and another 25% due to conformity.

Cf. the book "Nudge" relating to the architecture of choice, etc.

P.S. I still vote NO! After all, it's the damn government and my own body. Might change -- have checked the organ donation box in the past.  

By Anonymous Anonymous, at Wed Mar 24, 02:37:00 PM:

Because the default option on the form is "do not donate".

Think of the way the option is currently framed. First, you have contemplate your own demise, and then dismemberment. No thank you! The negative emotional associations thus mustered will not generate enough mental energy to change the status quo.

If the default option for organ donation were yes, you would pick up at least 25% more volunteers on sloth alone, and another 25% due to conformity.

Cf. the book "Nudge" relating to the architecture of choice, etc.

P.S. I still vote NO! After all, it's the damn government and my own body. Might change -- have checked the organ donation box in the past.

-gpc31  

By Blogger DEC, at Wed Mar 24, 02:45:00 PM:

This comment has been removed by the author.  

By Blogger DEC, at Wed Mar 24, 02:53:00 PM:

TH: "I've never heard of anybody coming back from the dead in the morgue. Not in modernity."

New York Daily News, 8Jan10: ""An Indian man declared dead surprised hospital staff by waking up during his autopsy."

It's not the morgue, but it's close enough for blog work.

RIA Novosti (official Russian news service), 6Aug08 : "An Indian pilgrim who fainted in a stampede that killed 150 people woke up in a morgue among bodies lined up for autopsies, local media reported Wednesday."

China Daily, 15Sep07: "A Venezuelan man who had been declared dead woke up in the morgue in excruciating pain after medical examiners began their autopsy."

In the case of the China Daily story, the adult son of an American physician wrote me: ""My Dad tells the story of when many years ago he was performing an autopsy only to discover the heart was still beating. The guy didn’t wake up though."  

By Anonymous Anonymous, at Wed Mar 24, 03:35:00 PM:

@ BomberGirl,

Just checked. From the FDA's website on organ donation:

Donors who lived in Britain, for example, at the height of the "mad cow" epidemic are excluded from donating because they are considered at risk for the human form of mad cow disease, variant CJD.

Looks like I'll be keeping my corpse intact after I'm gone.  

By Anonymous Randall, at Wed Mar 24, 03:36:00 PM:

I seem to recall an episode on "All in the Family" where Archie Bunker had a dream about his various body parts doing "bad" things post mortem (feet running away from a crime, etc) -- so this is nothing new.

For what it's worth I am a designated organ donor. In my experience the medical professionals are concerned about ethics (I'm employed by a newly designated "medical device" provider, so I have some insights into the industry).  

By Anonymous Dennis, at Wed Mar 24, 03:47:00 PM:

TH,

I'm not sure why anyone would have to give you or anyone else a reason why they don't donate their organs any more than why they don't donate to anything. It's a personal right like the right to vote.

That said, your suggestion to coerce the donation is at least as bad as the coercion we are looking at in the Obama Medical Theft Bill. The fact that you and Dr. Emmanuel(presumably) feel strongly about it does not really give you any rights in the matter---either of the donation or acceptance. Or has the Hippocratic Oath been repealed and I missed it.  

By Blogger Bomber Girl, at Wed Mar 24, 03:52:00 PM:

@ Anon 3:35...As is perhaps typical of government website, I could not find that reference but I will take your word for it. It may be different for those who lived in continental Europe where the steak tartare was, I'm sure, oh-so-pure than for those eating in the U.K.  

By Blogger GreenmanTim, at Wed Mar 24, 03:54:00 PM:

I blame the pernicious influence of Monty Python's Live Organ Transplants:

"Can we have your liver, then?"  

By Blogger TigerHawk, at Wed Mar 24, 04:07:00 PM:

@Dennis, what coercion? My proposal was simply an even trade: People who volunteer to be donors before they actually need the donation will be given absolute priority to receive donations over people who did not so volunteer. That seems both fair an non-coercive. What am I missing?  

By Blogger ruralcounsel, at Wed Mar 24, 04:12:00 PM:

For many of the reasons already articulated about trusting government and authorities, as well as....

So long as the government insists that organs cannot be sold for fair value, and thus keeps the market perpetually undersupplied, or prevents me from specifying to whom I am willing to donate organs to, I will continue to exert some small measure of control over my own body, even in death.

No one should feel they have a right to something belonging to some one else. Society already has too great a sense of entitlement to private property. Why encourage it more in death?

I certainly don't love mankind, as an entity in itself, enough to make blind donations. There are some people who I'd just as soon see die than get a transplant, I'm sure, if I got to know them.

If you feel that you should feel all holier-then-thou about being a donor, and want to try and shame others into doing the same, then you are part of the problem. I'm enough of a contrarian to not donate just because some jerk thinks they can try and pressure me into doing so.  

By Blogger JPMcT, at Wed Mar 24, 04:32:00 PM:

There's still a lot of misunderstanding about the transplant process.

Signing an organ donor clause on one's driver's license generally can only be invoked if there is nobody in the family with a medical power of attorney.

The definition of brain death is quite rigorous, required agreement of more than one physician and often a neurologist and includes "ominous" things like a flat EEG in the absense of sedation.

Nobody is going to be waking up in the morgue.

The physicians doing the organ harvesting are members of the transplant team...definitely NOT the patient treatment team. The two teams often do not even know each other and share NO communication about the treatment of the patient prior to the declared brain death. The do not bill the donor or his family.

The donated organ is transplanted to the best match, locally first, then regionally, then nationwide. Your position on the list is generally not a "time queue", but is rated according to your urgency and how good the match works out.

TH, most people ill enough to need an organ transplant aren't going to be signing any agreements to donate their existing organs when they die...and it is unlikely that most centers would want them even if they were willing or able to do so.

Funny, the same kinds of biases and urban legends were around when I did my fellowship in Transplantation Surgery back in the 70's.

The success and survival rates have progressively and dramatically improved since then...but, sadly, the "PR" part of it hasn't come very far.

The cynic in me wants to say that nobody signs the forms because nobody nowadays donates ANYTHING (that's the governments job, after all). But the reality is that Lifenet doesn't do such a great job with public education.  

By Blogger Foxfier, formerly Sailorette, at Wed Mar 24, 04:48:00 PM:

Generally?

Folks say "no" because they know that, if they are in a situation where they are good donor material, their family members will be there to say "go for it;" why not trust folks to adjust to the variable situations rather than trust that strangers will do the right thing.

If they're into bioethics? stuff like this and this.  

By Blogger JPMcT, at Wed Mar 24, 06:26:00 PM:

I said "generally" because the process can vary from state to state and from country to country. Several states have laws that give a donor registration (such as the driver's license consent) all the power of an advanced medical directive or a Last Will and Testament. Other states do not.

In Europe, organ consents are presumed to be the default UNLESS the individual registers his decision NOT to be a donor.

Any hospital that is a Medicare participant is REQUIRED UNDER LAW to notify the designated organ procurement team in the event of a death.

So...it's complicated...perhaps too complicated.  

By Blogger Foxfier, formerly Sailorette, at Wed Mar 24, 06:42:00 PM:

*nod* State to state there's different rules, and there's a long list of donor registration sites-- including at least one "I AM NOT A DONOR" site.

Shoot, from hospital to hospital it's going to be different-- and possibly even from doctor to doctor. Not all doctors are good folks.  

By Anonymous Boludo Tejano, at Wed Mar 24, 07:03:00 PM:

I had no idea that even in New Jersey so many people were so churlish.
LOL. Many outside of Jersey view “churlish” as the default Jersey state of mind. Consider this version of the New Jersey state motto: Ya Wanna ##$%##! Motto? I Got Yer ##$%##! Motto Right Here!

Princeton and Lawrenceville excepted, of course.Churlish and locales associated with elite private schools do not mix. Fight Fiercely, Harvard and all that. Unfortunately, Tom Lehrer didn't do "Fight Fiercely Princeton," so I had to settle for Harvard. :)  

By Blogger LilyBart, at Wed Mar 24, 07:31:00 PM:

The Brother of a good friend is an emergency room doctor - Recommended to his family that they let other family members know of their desire to donate, but NOT to put it on their Driver's License. He'd seen a few people taken 'uncomfortably' soon.  

By Blogger TigerHawk, at Wed Mar 24, 08:20:00 PM:

@JPMcT:

TH, most people ill enough to need an organ transplant aren't going to be signing any agreements to donate their existing organs when they die...and it is unlikely that most centers would want them even if they were willing or able to do so.

Agreed. I would give the priority treatment only to people who agreed to donate their organs before they had a specific reason to believe that they would need a donation themselves.  

By Blogger La Cot, at Wed Mar 24, 08:21:00 PM:

Yes: I've been checking that box since I first received my license. Maybe it's because I grew up in a medical family, but I think that organ transplantation, though imperfect, offers significant promise. I hope my organs can improve other lives should I meet with an untimely demise. (I'd rather be living, particularly for the sakes of those co-signed on my loans, but hey...) If, for some reason, donation is not possible at that time, then I'd like to my body to go to science in some manner, perhaps as a cadaver for teaching or research.

Back in the early '90s we had a great bumper sticker on a family car. It read "Recycle Yourself: Be an Eye, Organ, and Tissue Donor." Of course, given that we were in Southern Maine some anonymous person was offended and tried to scrape it off. We have suspicions as to the leanings of the culprit ;)  

By Blogger SR, at Wed Mar 24, 08:24:00 PM:

The "Taken too soon" scenario seems apocryphal to me. I have been the anesthesiologist on call who has to come in at 3AM to shepherd the donor through
the donation procedure. It is done in surgery after an extensive workup on patients who have been declared
neurologically dead after much discussion. They are then "worked up" with cardiac angiography in some cases, and supported to maintain maximum organ function. Why do they need an anesthesiologist? Spinal reflexes persist, and the circulation is controlled closely up to the point of its cessation. The point is, a lot goes into an organ donation that would mitigate against the nightmare scenario.  

By Anonymous barbara dillon hillas, at Wed Mar 24, 08:25:00 PM:

TigerHawk, I just had a horrific experience with my elderly Mom being treated as a pod for organ harvesting -without seeking family consent. She died last month. I came face to face with the realization that if you do sign up to be an organ donor, you are at the mercy of "others" and you lose the opportunity to have someone, anyone, be your advocate. I will NEVER ever sign up when renewing my driver's license, and have begged my children not to do it. I don't want to be at the hospital staffs' mercy. One assumes these doctors/staff think and act like we do, but reality is much harsher.

Organ donation is a noble thing, as long as the average person realizes that if you do sign that piece of paper, you could have those organs harvested before you are actually dead. Who do you want deciding what happens to your body???? The organ procurement people or your family? I have met the organ procurement people, and, trust me, you don't want them deciding your fate. Don't chastise your fellow Americans for not signing up to be organ donors. They can easily do it through a Living Will, and do it according to their wishes.

I would never, ever wish what happened to my family on anyone. It was a nightmare.  

By Anonymous Anonymous, at Wed Mar 24, 08:56:00 PM:

TH if you believe that donating organs is good, that's fine.

I don't donate organs for the same reasons that you or your readers would voice rather than sending me your available cash on a one time or recurring basis.

Dave  

By Anonymous Anonymous, at Wed Mar 24, 10:16:00 PM:

I don't donate as a protest against horribly evil 'bioethics' of requiring it to be donated. There is a shortage of organs precisely because there is a regulatorily required price of ZERO on them. The supposed 'bioethics' is in fact a horribly cruel and evil system creating the organ shortage and killing people who would otherwise be saved at very modest cost.

They can have my organs at $500 for anything I have more than 1 of (eyes, kidneys, lungs etc) and $1000 for anything I have 1 of (heart, liver etc) paid to my estate. Paid only for what they actually take. Maybe enough to cover burial expenses, a pretty modest price for saving potentially multiple lives, isn't it? But it is illegal. Because the 'bioethicists' are killing people with their supposed altruism. At $15k/kidney, I bet there is a wait list of living donors offering them up (at least internationally) rather than a wait list of people requiring multi-weekly dialysis until they die.

The 'bioethics' of donations is disgusting and evil.

I want nothing to do with it, and am embarassed that someone as otherwise financially astute as you don't see it. Allow people to be paid for their most personal of property, and there would be no shortage. Heck, allow me to be paid, and I might very well give it away for free, or donate the proceeds. Demand my property be given away for free, the bioethical system can go eff itself.

The bioethics of donation is unethical and evil.  

By Anonymous Anonymous, at Wed Mar 24, 10:21:00 PM:

The above 'unethical and evil' post was by me, Daedalus Mugged.

Your company is a medical device company if I am not mistaken. What would the supply of your devices be if the regulators required it to be donated, not sold?

Price = Zero = shortage

My kidney isn't all that different from your company's devices.

Daedalus Mugged  

By Anonymous Anonymous, at Thu Mar 25, 12:02:00 AM:

I have been an organ donor since I was 15, when my parents had to sign the form because I was a minor.

I will need to renew my license later this year, at which point I will no longer be an organ donor. I always felt a little worried about it for the reasons listed above, but decided that the possibility of saving one or more lives was worth the tiny risk of an unethical doctor. Now that Obamacare has passed, I won't trust any doctor willing to work under it, never mind the gutter scum that are going to become doctors once the pay and respect become comparable to other government bureaucracy jobs.

Now, I'll sign up when I get something out of it - like a significant amount of cash or the guarantee of better access for myself that you discussed.  

By Blogger Brian, at Thu Mar 25, 12:42:00 AM:

Thanks to JP for supplying actual info. It would be interesting to see a survey of medical professionals involved with transplants to see how many have signed cards, and it might fight some of the urban legends.  

By Blogger JPMcT, at Thu Mar 25, 01:40:00 AM:

FWIW, I have signed mine all my life. I've been on both ends of the process...done a lot of transplants, done a lot of harvests and unfortunately have had my share of trauma patients who wound up as donors.

Never at the same time, of course...just different phases of the career.

Most active clinicians are a little creeped out by the harvest people. The two teams are quite separate...like the offensive and defensive football teams. They simply don't cross paths...and patient care is NOT altered in any way if that person is a donor.

The harvest team has to keep the deceased person perfusing the kidneys and heart and liver...other wise the donated organ is pretty useless. Once removed, it is flushed with a preservant solution and cooled for transporation...with the clock ticking on it's usability.  

By Anonymous Anonymous, at Thu Mar 25, 07:44:00 AM:

I am not an Organ Donor simply because of Religous beliefs. I believe that my afterlife is linked with the preservation of my body intact in this world. Look up Indian beliefs. If I give up my organs my spirit would also be lacking them, I don't want to spend eternity without them.  

By Anonymous Anonymous, at Thu Mar 25, 11:16:00 AM:

Tigerhawk, how long have you been doing this in New Jersey?
I lived in Connecticut for two years in the early 90s, and I was happy to be an organ donor. It was printed right on the license.
Since returning to New Jersey, I've never been asked once, in person or by paper form, if I'd like to be an organ donor. Granted, I could be proactive and ask, but the idea that you are asked regularly in Lawrenceville while I'm never asked in Medford,is puzzling.
I guess next time I'm up for renewal, I'll raise the subject.

Steve K  

By Anonymous Dennis, at Thu Mar 25, 11:47:00 AM:

TH

Perhaps you're right. Coerce may be too strong a term, though one of its meanings, I think, infers control through exploiting ones fears, anxieties, etc. A donation, however is a gift freely given, of that I am sure. To predicate that gift on the fear of one's (or a loved one's) death is clearly not a gift freely given. The donation of an organ and the need for one are ethically two separate actions and I think we are better off to leave them that way. You and I are, after all, well meaning individuals. I can't say that for Dr. Emmanual or his boss and fellow travelers such as our science czar. No telling when the simple solution will lead to the final solution with that bunch.

I am intrigued with the idea of a simple purchase agreement for a nominal sum (enough for an inexpensive burial seems reasonable)and will think about that some.

I am also pursuaded by the suggestion that the offer be between the patient and his family and then communicated to the doctor rather than simply through a check box on a driver's license. That does not at all mean I have any ill feeling towards the doctors or suspicions about their motives. I think they deserve our utmost gratitude for their professionalism and skills. I just think the removal of one's organs should be a less random act and accorded more dignity (after all the body is still a living entity at the removal of the material).  

By Blogger John, at Thu Mar 25, 03:29:00 PM:

I'll answer the question about why I'm not an organ donor.

Maybe this is getting a little too personal, but here goes:

I'm an ex-cult member.

Everything was demanded of me. My money, my time, my relationships, my obedience, and my acceptance of abuse.

I'm very hesitant to give anything, and I'm very leery of people who want stuff from me. Like money, obedience, and body parts.

Maybe it's churlish, but I'm erring in favor of keeping my stuff, lest I be taken advantage of and exploited. If someone wants something from me, I regard that person with suspicion. If someone starts lecturing me that I have a moral obligation to sacrifice myself or a part of me, I get even more suspicious.

I'm keeping my body parts even after I die. The more that people like Cass Sunstein get closer to demanding them from me, the less likely I am do donate them. No one is going to exploit me again but me.  

By Anonymous Anonymous, at Thu Mar 25, 05:55:00 PM:

I doubt it matters and don't remember what I agreed to.

When practical I do whatever I sense the government clerk won't like.

If I am unsure what the clerk would prefer I try to take the course more likely to help someone.

The state, Doctors, and hospitals will just do what they wish anyway. The databases can be updated to reflect what the deceased "should" have wanted.

To control the database is to control the past. To control the past is to .......

KTWO  

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