Thursday, April 20, 2006

Organ Donor Awareness Month



April is Organ Donor Awareness Month. You critical care nurses out there may have already seen this month's Critical Care Nurse magazine, but if you haven't, it's devoted to organ donation and it's very, very good. Check it out.

One of the discussions I've had recently is how to increase donation rates(well, not just me but the whole HRSA Collaborative.) Our neighbors to the north(Canada, for those of you who are geographically-challenged), are considering the possibility of presumed consent. This is where an individual would have to "opt-out" of being a donor on a national list or else, in the event of brain death, would be presumed to be a donor. Spain, which has the highest organ donation rate in the world uses a system of hospital-based transplant coordinators. Here in the U.S., consent must be obtained from the next of kin-who have to make this decision while their loved one is still on a ventilator, at or near brain death. Not an ideal time for a well thought out, informed consent. Many states have enacted laws for first-person consent. This means that if you document that you want to be an organ donor-on you driver's license or on a registry-it is considered informed consent and your next of kin's permission is not needed. Where I come from this has not been challenged. Most families want to honor the deceased's wishes and will agree to donation when they realize that's what they want.

Another, more controversial idea is that only people who sign up to be organ donors should get organs. I'm interested in hearing opinions on this. Should someone who wouldn't donate their organs receive one? What if they changed their minds? Something needs to change. Waiting lists are growing as technology keeps potential recipients alive. Today, 18 people will die waiting for an organ. It's an uneasy thing to consider theoretically. Now think about how you would feel if it was your spouse, your child, your parent who was brain dead. Would you donate? Recently I asked a mother of a teenager who died suddenly if she would donate her daughter's organs. She said she knew it was a good thing and she wanted to help other parents who were waiting for an organ to save their kids lives-but she couldn't see her baby "cut up". Who can blame her? This is the last decision she will ever make for her.

I personally don't care what you do with me when I die. Cut me up and bury the rest by the pound. I won't need it anymore. Let my eyes help someone see their children or a sunset. Let my skin be used for grafts for burn patients. Let my heart, lungs and liver go to someone who doesn't know from one day to the next if it's their last or their first-with a life saving organ. My kidneys, pancreas and intestines can go to someone with a debilitating disease. Take every bit of it. If you feel that way too, tell your family, write it in your living will, put it on your driver's license and tell your family again. Over 90,000 people are counting on you.

31 comments:

Bob said...

"She said she knew it was a good thing and she wanted to help other parents who were waiting for an organ to save their kids lives-but she couldn't see her baby "cut up"." This is where some PR work might help. People are concerned that their loved ones are going to be sliced & diced to get the necessary organs. I can see where parents, especially, would be freaked by that image. All the shows and programs that talk about organ transplants make a big deal about the waiting list, being on a pager in case something comes available, the ups and downs the recipients go through. Only a few that I've seen talk to the donors' families, and I don't think any have ever shown a donor's body post-harvest. Maybe it'd be too graphic for prime-time TV, but maybe people need to see that, depending on what organs are taken, the body is still pretty much presentable for an open-casket funeral. Make sure it's in any literature on the subject. Obviously if the whole body is used this concept changes, but donating a liver or heart doesn't tear up the entire body.

I'm not big on presumed consent, just like I don't believe in the draft. I think increased education would help a lot. As big as we are on movies and TV programs that revel in death (Rambo, et al), Americans don't like to talk about death and dying, and organ donation is part of that discussion. You know what would help? A celebrity dies, and his or her organs are donated (just please don't even think about giving me Paris Hilton's brain!). Nothing gets people on the bandwagon like hearing that Brad Pitt or Angelina Jolie carry organ donor cards!

Bob said...

And as a follow-up: People don't know what happens in the embalming process. They see a body in a casket and think it's all hunky-dory. They don't know that all those organs inside have been broken up with a probe inserted somewhere in the vicinity of the collarbone to insure everything's well-perfused with embalming fluid (at least that's what I got from a Discovery Channel or TLC program on funeral homes). If they knew that they might be a little less worried about being "cut up" in organ donation.

TC said...

Bob, I agree with everything you've said (well, except presumed consent-I've got conflicting feelings about it) Part of my job is addressing people's misconceptions-including what happens during donation, without being too graphic. I'd like to tell people that being embalmed is even more traumatic to the body than donation but I don't want to gross them out. Embalming grosses me out-I don't want that done to me, it seems morbid, but I digress. The organ recovery process just leaves an incision down the chest and abdomin like any other big surgery. For tissue donation, it's more involved. But you're 100% correct-the person who donates can have an open casket and no one will ever know. Many of my donors are also medical examiners cases and they will get "cut up" anyway for the autopsy. Sometimes this sways people, because they can't say no to an autopsy in a criminal case. An interesting point you bring up is personal choice/public interest. At what point, if any, does the latter outweigh the former?

Judy said...

I'm not in favor of presumed consent and I'm not in favor of banning people from receiving organs if they hadn't given enough thought to the process and were reluctant to do so themselves. I expect that few things are more convincing to family and friends than seeing a loved one whose health has been returned as a result of the gift of another.

I don't think I'm eligible to donate much beyond corneas at this point - I had colon cancer treated with radiation and chemo. Treatment was finished 5 years ago, but the Red Cross doesn't want my blood, so I don't know if anyone would want my organs when I don't need them any more. I should look through your blog to see if you've already done this before making the request, but if you haven't recently, could you provide some information about who is and who isn't a potential donor?

Keith, RN said...

Wow. So many people die waiting for organs. In the state where I live, I've been told that my patient who needs a liver would be better off moving to Florida, establishing residency, getting on the list, obtaining a new liver, then moving back here when he's recovered.

I agree with you, TC---take it all, and burn the rest! I'd love my organs to elongate another's survival.

You are doing amazing work in the world!

Robin said...

Yeah, people can have anything of mine that will help them once I'm not using them.

And I must say, deciding to be a living donor was actually a pretty easy decision (though perhaps I was just being obtuse), and it still stands as one of the best things I've ever done in my life. Whenever I see my friend (the recipient) and her two sweet little girls living their lives normally, it makes me feel awfully good.

KarenM said...

I'm in the opposite camp as the previous posters. My family and I are not pro-donation. We dislike the lack of openness. The donor family can only consent to donation, no other conditions such as open exchange of information and meeting at a later date. I know this sometimes eventually happens, but the donor family can't require this as a condition of donation. Donation is where adoption was 15 years ago. Maybe things will change.

KarenM in NC

Dream Mom said...

Oh boy, I am ready to pass out just from your descriptions so I would probably never make it past the prime time TV show!

You make some interesting points however I don't think I would do it for myself or for my severely disabled son. My son will most likely die young and yet I must admit, I probably won't allow organ donation. He has had almost 50 hospitalizations in his life and has been through more than most people will ever go through in a lifetime. When the time comes, I am going to let him rest in peace. Unfortunately, I don't think I could make any other decision at this point.

frostedlexicharm said...

My son is a double-transplant recipient. He was 11 mos old when he received his organs, and is now age 4. My family is, understandably, very pro-donation.

I do not understand Karenm's position. I do not want to meet the people who gave up their baby's organs for my baby at all. I sent a note at the time thanking them for their gift and expressed sympathy at their loss, and I feel that was enough. I don't want to know their names or where they are from, and I certainly don't want them knowing the same information about me or my family. However, we were made aware that *IF* our family and the donor family consented, a meeting could be set up. It was entirely up to us, and them, so the option *DOES* exist.

I have a very dear friend, another "hospital mom" whose child had a transplant early in life. They agreed to a meetup with the donor's family, with somewhat disastrous results. The donor's family now consider my friend's child as a surrogate for the baby they lost. They "guilt-tripped" my friend's family into an unwanted ongoing relationship, and would not be deterred. At present, my friend's family have moved and changed their contact information twice in an attempt to distance themselves from the donor's family, and to get on with living their own lives.

Granted, not all donors' families are going to behave in that fashion, and I do feel that if both families are amenable, a meeting can be a beneficial thing. The problem is, once the meeting has occurred, and things go badly, there aren't a lot of "fixes" for it.

--lexi

sailorman said...

I would be strongly against opt-out donation. Though I'm personally a potential donor (hopefully not, as I'd prefer not to die young, but it's on my license) it just seems to... "china" somehow. We ALL know that in an "opt in" system, you'll have some people who don't donate, though they would have done so. But in an "opt out" system, some people WILL donate, who didn't want to. The second harm is far greater.

I think a lot of it has to do with ownership. I really get uncomfortable with the government asserting privilege over my body. I have no problem, however, with doing anything I want with my body. And I do not believe I lose ownership merely because I happen to be dead or disassembled.

That means two things.

1) So long as the government is in charge (directly or indirectly) of "giving out" organs, you shouldn't make it conditional on donating. We don't condition medicaid on whether you took your vitamins; we don't condition ER treatment on whether you were drunk when you tried to start your lawnmower.

And after all, it's not THAT many people who die each year. I refuse to play the "special" game of treating potential organ recipients (or any othe group) differently: It's the government's job to save lives and improve health in general, not just for a few folks. And I believe that even in the limited worls of health care, you could match or exceed any mandatory-donation or opt-out benefits without the huge costs on autonomy.

2) If you privatized it, you could ethically change the rules. Would you be willing to donate a kidney, and accept the inherent rick of the operation or future kidney failure? How about if doing so got you a "first shot" if you ever needed a donation of your own? How about if

oops gtg boss coming

Robin said...

This *is* getting kind of interesting.

Sailorman, when you say,

"in an "opt in" system, you'll have some people who don't donate, though they would have done so. But in an "opt out" system, some people WILL donate, who didn't want to. The second harm is far greater."

...I have to disagree. In the first case, somebody loses the opportunity to get a functioning organ, and the dead person is dead. In the second, a living person receives a functioning organ, and the dead person is still dead. Isn't the second scenario better, considering that it has helped a person's life?

sailorman said...

The issue is that in our society, we tend to put an enormous weight on what I can best call "NOT making people do what they don't want do do". We actually seem to put less value on "making people do what they should do". And the "opt out" seems to reverse that.

Sigh. I'm not explaining this well.

Let me try again:

In terms of net societal benefit, there are a LOT of laws which would produce good results. We already have some of them: tax the rich to help feed the poor, etc.

But to date, our bodies have generally been sacrosanct. In fact, they're so protected we can't even sell them OURSELVES, or legally perform certain operations on them (this makes no sense to me at all).

When you suggest a system which will eventually mean a donation will be made from someone who was unwilling, you're talking about changing that. And on the face of it, I'm not sure it's a line I want to cross. If the government can take your organs, it's open season.

Blood donation anyone? You're healthy, you can spare a pint. And sure, maybe you don't want to. Bit do you really think you can mount a compelling argument that a desire not to donate blood is that much more compelling than a desire not to be dismantled and put into others?

The underlying problem is that you're trying to use a NEGATIVE externality to force an issue. Using negative acts to copmel a positive act is problematic. Making someone agree to donate becaue they will otherwise be barred from receiving is a negative act; so is forcing them to opt out.

I'll quote your response and insert my own comments:

In the first case, somebody loses the opportunity to get a functioning organ, and the dead person is dead.

However, the dead person (who owes NO personal reponsibility to the living person) has his wishes respected. The living person is no less well-off than if the dead person had not died.

In the second, a living person receives a functioning organ, and the dead person is still dead.

However, the dead person (who owes NO personal reponsibility to the living person) has NOT had his wishes respected.

Isn't the second scenario better, considering that it has helped a person's life?

Not in my opinion.


It's ironic because there's a GREAT way to get organ donors, and it's a POSITIVE externality. You can simply pay them. Give people $500 each and they'll line up to put the sticker on their license. Hell, you can even select for nonsmokers.

But you should not transfer a societal burden onto the unwilling. At least you should do so when there's a way to make people be willing.

Robin said...

Sailorman, you make good points, and you make them very well.

I understand your rationale and it's very reasonable, although we are still on different sides.

I suspect that these issues will prevent 'opt-out' from ever becoming the norm.

It's just a shame that perfectly good organs that could really help people are not getting used.

KarenM said...

Frostedlexicharm,

I fully understand your position and think one should do what works for them. I would simply wish to be able to convey my wishes (and have them abided by) if I was to donate an organ of a loved one. As donors, I believe one should be able to make certain requests. Since the system is not set up to ensure these requests, we would decline.

As I mentioned, this situation is similar to adoption. Now, people have an option of open adoption whereas before it was only closed adoption. The current way of thinking allows people to choose what best suits them.

Unfortunately, organ donation is not this far along. It might be one of the many reasons that people refuse to participate.

KarenM in NC

sailorman said...

Robin said...
I understand your rationale and it's very reasonable, although we are still on different sides....
It's just a shame that perfectly good organs that could really help people are not getting used.


Well as we're both strongly pro-donation, we're not really on different sides ;)

And I agree it's a shame. Organs should be used if possible. It would be a better world if everyone chose to donate.

I think we only disagree about the METHOD.

I would support (for example)

-spending money on prodonor advertising
-spending money on pre-donor bribery (agree to donate if you're ever killed; get paid now for such agreement)
-Allowing private donation and transplant firms to exist
-Allowing supervised sale of organs by rational adults

Oddly enough, I don't see medical care in general as a "right" and I REALLY don't see receipt of an organ transplant as a "right" either. If the government wants to get out of the transplant business that would be OK. It's just that I'm very, very, leery of allowing the government to make these decisions; so long as they control the market I think we need to err on the side of caution.

Sheesh. We only need one kidney. Can you imagine how many kidneys there would be if you could sell one? We could even require all sales to include a mandatory lifetime health insurance which would pay for things if the donor's one remaining kidney ever failed.

This doesn't seem to me to be a bad thing: the overall health risk from selling a kidney is probably much less than the risks of a variety of other things which are both legal and have less benefit.

Robin said...

I agree with your idea of paying for organs. The only problem I have is that I already gave mine away for free! Man, when I think of how I could have paid down my mortgage... Well, when the time is right, I'll just have to increase my asking price for my left eye, lung, and testicle!

(please don't make me have to explain to anyone that I'm joking!)

TC said...

Well, I certainly got what I asked for-a lively discussion.

DreamMom-I've been to your site and I certainly understand your position. No parent wants to see their child suffer-I think that must be one of the hardest things about having a special needs child.

Sailorman-you say you don't want the government to "own" your organs, but you'd trust a private, for profit corporation? And if everyone who signed up as an organ donor got, say, $50, who would pay for it? As for the health insurance companies, in the US at least, some have DROPPED people who donated kidneys because they don't want to pay the cost. Again, corporations aren't altruistic.

Karenm-your position of comparing organ donation to adoption is a first for me. I have heard many reasons why people don't donate-from people who are actually making the decision, not just talking hypothetically. To say that giving a kidney is the same as giving up a child for adoption boggles my mind. My organization passes much correspondance from donor family to recipient and back again anonymously. Some times they both agree to meet. Be careful what you wish for. If your child recieved an organ, would you still want to know if the donor family was in jail for killing the donor child? You say this is the reason you wouldn't donate, but you would have to use the same reasoning to refuse an organ for you or your family member-would you?

sailorman said...

Sailorman-you say you don't want the government to "own" your organs, but you'd trust a private, for profit corporation?

Trust? No. As a lawyer, my worry about the government has more to do with an expansion of governmental power into personal liberties than a fear they'll botch the job. A private corporation wouldn't have the same govewrnmental issues, thopugh I think they are more likely to have other problems. Still, this isn't my main suggestion, it was just an aside.

When I think abot it more, I'm tempted to back away from this entirely. And PLEASE remember that on a personal level, i am very pro-donation.

And if everyone who signed up as an organ donor got, say, $50, who would pay for it?

I do not have the resources to do this calculation. But the economic cost of not having enough organs for transplant is well known. And of course, you don't need everyone to sign up, you just need enough people to sign up.

Anyway, the economic question becomes: if "X" people sign up for donation, how much ("Y") will the additional available organs save in reduced costs (eg not needing dialysis)?

If the cost savings are Y, you could pay each donor Y/X as an incentive and break even. I strongly suspect that we would pay less in donation incentives than we pay now in non-transplant maintenance. Perhaps I'm wrong, in which case this would be economically unfeasible.

As for the health insurance companies, in the US at least, some have DROPPED people who donated kidneys because they don't want to pay the cost.

This can be prevented by legislation with comparative ease. However, I understand why they would want to drop them. I admit that it seems odd to expect a single health insurance company (especially a small or local one) to bear the cost of donation and not reap any of the benefits of transplants. I would support the government paying for donation costs and related expenses.

Almost everything is for sale at the right price.

There is certainly SOME amount which would induce an otherwise anti-donation person to rationally choose to donate.

There is certaily some LESSER amount which would induce a neutral person to donate.

And there is an even LESSER amount which would induce an otherwise apathetic but generally prodonation person to donate.

I propose attempting to capture all of the final group and some of the middle group. You can control this merely by how much you offer. This is both cheap, and ethically sound.

If they gave an on-the-spot $10 discount to anyone who renewed their license and became an organ donor, I wonder what would happen?

That Girl said...

From 20 weeks on I carried a letter around (copies with my doc) requesting that in case of accident/injury my son was also an organ donor.
I feel the same way now, and I hope that if he needs a transplant (which he may) other parents have made the same decision.
I would also like to point out that many states have required living organ donation in spirit, while South Dakota has forced organ donation as the law.
The Moral of the Story: Find some way to "prove" god intended organs be donated and the law will change to force people to do so. Im sure there are many of appropriatly vague passages that will help.

KarenM said...

TC,

I'm not comparing adoption with donating a kidney per se. I am using adoption as an example that has changed due to societal pressures. Due to shortages, the circumstances of organ donation may have to adapt also. I don't think the current situation for organ donation is optimal.

And, yes, my reasoning would be used both ways. If someone in my family needed an organ and the donor family stipulated that they wished to meet us at some recent time after surgery, we would either agree to their request or have to decline the organ.

I truly feel a donor family has the right to request certain conditions (and that might include permanent anonymity). The recipient family has the responsibility to accept the conditions or continue to remain on the transplant list.

KarenM in NC

Miko said...

My family freaked out when I put the little pink "donor" sticker on my drivers' license, saying that I had just allowed myself to be killed, since they would have to harvest my organs while they were still working. It's a good question as to whether or not they'd accept one of my organs if they needed one & I was brain dead. I'd hope so.

I think that the presumed consent is a good idea: make it easy so there's just a sticker you have to put on your license that says you don't want to be a donor. Maybe introducing legislation to require people who need organs to also be donors would wake people up to the fact that it's an issue. In Los Angeles, one of the major hospitals' organ program was shut down because of shady organ practices...now thousands of people are unable to use that facility, even if they have an organ available.

TC said...

Miko, tell your family to chill out! Seriously, it's not a death sentence to say you want to be an organ donor. Some time I'm going to write a list of donation myths, but in the meantime, no one's going to kill you. I worked as a trauma nurse in a level one trauma center for several years. I also worked in several other, smaller ER's. Never, EVER, did we have a trauma patient come in and go "oh, this one's bad, let's check his license." Or even worse, "He looks like he has a good liver-let's stop working on him." Usually, if the police or security don't already have it, the nurse gives the wallet/purse/ID to registration. Not to mention that doctor's and nurses are very committed to keeping their patients alive. Thanks for signing up! And for telling your family-no matter how hard it was.

Miko said...

hehe, thank you, TC :) I'll let them know. I heard this on the radio today &, if anyone makes it this far down in the comments, they may enjoy this story at NPR.org

Julia said...

Two things I've learned through the posts here (by following links)... It never occurred to me that Organ Donor Cards are available online. (duh!)

"Beginning in late 2006, Texans will be able to register their intent to be an organ, eye, and/or tissue donor when they renew their driver's license or personal identification card." Even though my card doesn't expire for a long time, I'd probably renew or have a card re-issued just because of this!

TC said...

Julia, that is so cool. I had no idea either and now I'm making it a link. Thanks!

frostedlexicharm said...

I have serious reservations about being able to request specifics about potential future organ recipients (like I *think* KarenM is suggesting). I hope she means "we want to meet up after the transplant as a way of finding closure for our loved one passing on". However, in the past, there have been people who have said, "We're white supremacists, we don't want a black person getting our son's organs." Lest you think this never actually occurs, in Britain in 1998, the relatives of a dead man consented to the use of his organs for transplant on the condition that they were transplanted only into white people.

Placing restrictions on who can get your organs is, in my mind, a slippery slope. People may set out to do it with the best of intentions: oh, we want to meet up after, see how things are going. But, opening that door means that people who don't like gays can say "only give my corneas to some hetero folks", or people who don't like alcoholics could stipulate "don't let someone who lost his liver through alcoholism get mine", etc.

--lexi

sailorman said...

It's a question of weighing political morals over medical ones.

If someone who would otherwise NOT donate is convinced to donate by allowing them to put restrictions on their donations (only to blacks) there is a net benefit.

Nobody who isn't in the class is helped directly, but they suffer NO loss, as the individual would not have donated to them absent the restriction. The blacks who are eligible get an obvious direct benefit. And the remaining non-blacks (and nonrecipient blacks) get an indirect benefit, as there is now lowered black demand for the organs which are in the "general pool".

The costs? Well:
1) The "no commonality" cost. In theory you could might have all organs being donated with conditions, so there were no 'general' organs to pass around. Iin practice, this is extremely unlikely. If you have succeeded in raising donation across the board (with conditions), you don't actually need a large proportion of "general" organs to make things work.

2) The "promotes racism" cost. Well, this is true. But IMHO racism is a "more acceptable" cost than death.

3) the "Waste" cost: in theory a donated organ which cannot be placed will be discarded. This is an economic fallacy, as but for the restrictions the organ would not have been donated at all. You must take the restrictions and their effects wholesale; this is a neutral effect.



Unless we're going to ban racists from RECIEVING organs (which we don't), we may as well prompt them to DONATE organs.

Obviously this is distasteful, which is why I'm a general donor. But I think it's pretty hard to suggest that the net effect is negative.

I confess it's tempting, though. There's certainly a part of me that wants to say "I want my organs to go to someone who needs them and didn't knowingly kill their own. Alcoholics looking for my nice, alcohol-and-drug-free organs to replace theirs are last in line. People who are on organ #2 because they blew off their transplant doc's medical advice are at the end of the line, too. Mickey Mantle? Send him away."

The reality is that I'll be dead, so why be picky?

Still, when it comes to choosing who gets what after my death:

I can do it with my money.
I can do it with my property.
I can do it with my dog.
I can even do it with the guardianship of my children.

Why are my organs different?

KarenM said...

Frostedlexicharm,

Yes, you are correct that my intention would be to have the condition of meeting the recipient of any donated organ. That is my intention, but I would not be against another donor placing their own set of conditions. I truly believe that this is the domain of the donor family. Some might request strict anonymity and to never be contacted. That should be equally respected before receiving an organ.

Another situation: we have donated money to one of our state universities along with another civic organization. In each instance we had specific conditions in mind. It was not a problem in either case. Both institutions gladly accepted our money and our conditions with nary a blink. We have some oversight and know that the funds are being used for the purpose we stipulated. It's been a win-win situation

I really think that organ donation must change with the culture. Nothing should be dismissed out of hand.

KarenM in NC

Anonymous said...

I am a mom in my 30's that had a toxic reaction to a prescription medication. My health rapidly failed and I required a liver transplant in January 2003. Prior to 2002, I was very healthy. I signed up to be an organ donor at 16 (still have the card w/my father's signature since I was a minor). Never in a million years did I think I would require any organ transplant.

I wrote to my donor family and continue to do so every year on my transplant anniversary. I don't know if they have ever received my letters. I can never thank this family enough for saving my life while they suffered such a loss.

My children were very young at the time of the transplant and I am very fortunate to be alive to see them grow up.

There was a series on A & E in 2003 called "Take This Job". Each show shadowed a different career. One was a transplant co-ordinator. The woman featured worked with donor families. I found it very educational. Donor bodies are not disfigured.

I consider the gift of life a miracle.

Anonymous said...

I'm for giving my Organs to whoever needs them but, my husband is against it so I'm writing a paper in my Law class and just about this bullcrap of him making a decision Im already making.

marcy said...

I want to thank all organ donors and their families for their unselfish gift!! Because of them I have a beautiful healthy grandson who just celebrated his first birthday with his new heart.
Thank you!!!