Monday, February 11, 2008

Penultimate Gift


In my local newspaper there was recently a letter to the editor, the gist of which was that people who indicate they'd be an organ donor (we have a place on our driver's license to do so) ought to go to the head of the waiting list were they ever to need one; and conversely, those that don't so indicate go to the back of the line. It would, he said, go a long way toward solving the shortage of available organs. And so it might.

It's been many years since I was involved in a very busy transplant program. Way back then, there were, in some localities, committees set up to decide the relative worthiness of potential recipients. Doctors, nurses, social workers, clergy, lay people met to hash it out, to prioritize recipients of those scarce bits of flesh based on highly subjective considerations of people's relative value. To someone. Far as I know, such deliberations no longer occur. The ideal, of course, is that one's place on the list is determined only by medical need and appropriateness, and the urgency thereof (Mickey Mantle and other celebrities notwithstanding.) The letter writer's suggestion, it seems to me, is a step backward. I've indicated that I'm a donor; if I were given an option, I wouldn't specify that it should only go to another person so inclined, nor would I want it to be legislated that way. And, I'm pretty sure, I wouldn't place a lesser value on the life of a person who, for reasons unknown to me, chose not to be a donor.

Such were my thoughts as I read the letter, and I was surprised to see that it came from a person who identified himself as executive director of an organization involved in promoting organ donation. Surely it's a worthy goal to increase organ donation among the population. (We're talking about post-mortem donation here; living donors are self-directed, as they should be.) As it now stands, there's no self-interest in checking that box -- other than feeling good about oneself, and, of course, the hope that it might cancel out a life of dissolution and get one a ticket to heaven.

I'm not certain about this. The letter writer is more involved than I am. Maybe it's a smart idea, especially as society becomes more self-centered and less generous. Maybe "what's in it for me?" ought to be the motivator, as it is in so much else. Could such a system be gamed? After all, most people who indicate their willingness don't end up being a donor. And, I wonder, how many cadaver donors come from that checked box, without input from family? Conversely, how many potential donors are "wasted" (if that's a proper term) because of a lack of advanced directive? In my experience the decision is generally made at the time of disaster, by the family, regardless of prior indications. These questions are part of why I'm uncertain. The rest, I guess, is philosophical. Tenuous territory for a surgeon.

For the time being, organ donation is a gift with no strings; an act of generosity and grace and, often, a way forward for the bereaved. (I refer the reader to a post of mine from a while ago.) The better part of me (that vanishingly small nut-like nubbin, ever more withered and battered) says it ought to stay that way. The pragmatist and cynical (ever growing, especially that last part) says, given what we are become, maybe the guy is onto something.

22 comments:

Stethoschope said...

IMHO, organ transplant priorities should definitely not have anything to do with the willingness of the person in need to donate his organs.

If for no other reasons (and I can think of several other reasons) it is a very fine line to tread - someone may decline donation on selfish grounds, but may also do so from religious reasons, for example. And what do we do then? start picking out which reason works and which doesn't? Is religion obviously a better reason than plain selfishness? Personally, I guess I'd say so, but it is just as tangible (not at all).

So we should definitely continue focusing our efforts on explanation, education and shining as much light as we can on the need of those awaiting transplants and on the process of transplanting, and we have to believe it will bear fruit, eventually.

taking some of the other routes offered now and then is overstepping our boundaries by far too much.

Anonymous said...

On Feb 22 it will be 13 years since my brother was in a tragic logging accident, he was 28. Many months after his death my father received a letter that 68 people were recipients from his tragic death.

This information really didn't help me intially while I was grieving, but now has given me much comfort the past few years.

From my personal experience the gift of life is very much a blessing. It has such an impact on so many individuals. Yet,if someone declines to be an organ donor that should be respected. They may have really good reasons, maybe they know it might be hard for a family member to deal with, or a religious reason. What reasons would be acceptable not to donate? Who can make that decision? Some paid government official...I don't think so. Personally for me, donate it all. But I will stand up for person who wants to say no. Those individuals should not be treated any differently then me.

Anonymous said...

Hmmm... throwing purported willingness to donate into the mix doesn't sound managable to me. It could get complicated managing the exceptions. For example:

My oncologist told me that my history of breast cancer (treated with surgery, chemo, radiation and Tamoxifen) disqualifies me as an organ donor.

Maybe maybe not...
http://www.cancer.org/docroot/ETO/content/ETO_1_4x_Donation_by_Cancer_Survivors.asp?sitearea=ETO

In light of this, I filled out the paperwork and willed my body to the local medical school. After all, when I'm gone I won't be needing it.
http://www.uth.tmc.edu/nba/willedbody/index.htm

My family agrees. Dr. Sid makes this point well... ultimately it's the family who makes the decision. Funerals serve the living.

sterileeye said...

I agree with stethoschope. Making it possible to get ahead in the waiting line and giving privileges for donating is the wrong way to go.

The next logical step would be that you don't get an organ if you're not willing to donate. And if that becomes the case, why not also so with blood?

But I understand the reasoning behind the letter. Lack of organs, and in my city also blood donors, is frustrating and should be unnecessary.

It is important for all people to realize that we're part of a community and need each other, and sometimes even parts of each other, in order to live.

I wrote a post about this issue a while ago. My suggestion was that instead of actively indicating that you're willing to donate, it should be the other way around. People not willing to donate should have to actively reserve themselves.

I think that would result in more donors, and more well-considered reservations.

Rob said...

I think Webkinz are the Penultimate Gift.

I think this post has convinced me to vote for Obama. That dang George Bush and his transplant beliefs.

I love it when you do these political posts.

No, I haven't been smoking something. Honest.

Calli Arcale said...

I don't think it would be legal. I mean, it's illegal to pay people for donating organs (apart from a possible payment to reimburse medical expenses and lost wages in the case of a live transplant). Getting moved automatically to the head of the transplant list seems a huge payment.

AlisonH said...

And yet those who may in a few years need organs (that could be me) are more likely to be the ones who can't check yes because their own aren't eligible for giving out.

To anonymous--many, many thanks to you and your family. My mother has her eyesight due to someone like you.

Sid Schwab said...

Rob: "not smoking" doesn't narrow it down much.

Bongi said...

sterile, when i was in the transplant unit in training we had a rotating belgium registrar. he told me that in their country everyone is automatically a donor unless you apply to not be a donor. apparently they have little problem with organs.

on the point of the topic, i agree that the decision should be based on medical reasons alone.

Stethoschope said...

Bongi,

I actually encountered a debate about this matter not long ago. In this case, also, I believe it shouldn't be the case. I don't think anyone should need to do something actively in order to prevent something happening to him after his death.

during said debate, someone likened it diving ones assets after his death - even if he doesn't have a will, he knows something will happen to them, and generally knows how they will be spread out. To this I can mainly reply with an answer devoid of much logic, but filled with what I think can only be explained as a basic "feeling" - organs are not assets. They're organs - they weren't ours to give and they aren't ours to take without specific authorization.

Once again, I am all for donation but I think we need to study carefully what means we choose on the way to our (doubtlessly noble and important) end.

Just my take on things, Cheers.

JP said...

Dr. Schwab, do protect your nut-like nubbin.

Sterileeye, I disagree. Opt-out programs are great in theory, but tough to execute (sorry, pun) and may have the opposite of the intended effect. We see this often in urban environmental programs. Should mandatory notification be sent home with kids indicating that the day after tomorrow, the school will be doused with synthetic pyrethroids? Believe it or not, plenty of parents with an asthamtic 8-yr don't want to know this. You cannot force compassion any more than you can force good parenting. This is especially true in the good ol' US of A, where the personal freedom to “check this box” is a deeply entrenched value. Encouraging people to do the right thing through education is much more cohesive on the whole, not to mention more in keeping with the spirit of “donation”.

Dave said...

I am the author of the letter to the editor that prompted this blog post. LifeSharers is the name of the group being discussed here. Our web site is at www.lifesharers.org. Anyone can join for free. There is no age limit and nobody is excluded due to any pre-existing medical condition.

I will respond to the several thoughtful comments in a single comment. But before we get into the tall grass, lets remember what the point is -- it's to save lives. Americans are burying or cremating 20,000 transplantable organs every year. Over 8,000 Americans die every year because there aren't enough organs to go around. Most of these deaths could be avoided if we stopped the terrible waste of transplantable organs. Allocating organs first to registered organ donors will increase the number of organ donors and save lives. So ask yourself, which objection to this idea is worth forgoing saving those lives?

Stethoschope wrote that some people may decline organ donation for religious reasons. There is no religion that forbids donating organs while allowing accepting organs for transplan.

Anonymous wrote "if someone declines to be an organ donor that should be respected." If that's true, shouldn't we also respect the decision of someone who decides to donate and wants organ donors to get first crack at his organs? I don't see how you can defend one position without definding the other.

Anonymous wrote that a history of breast cancer disqualfies a person from organ donation. AlisonH made a similar point. But nobody is excluded from offering to donate. Nobody knows today who's organs will be transplantable when they die, because surgeons keep changing the definition of what they'll transplant in response to thoe growing organ shortage. They're transplanting lots of organs today that they would have rejected a few years ago. In a few years, they'll probably be transplanting lots of organs they'd reject today. So everybody can (and should) offer to donate and let the surgeons sort it out when the time comes. In any event, LifeSharers does not exclude anyone due to any pre-existing medical condition.

sterileeye suggested that "instead of actively indicating that you're willing to donate, it should be the other way around. People not willing to donate should have to actively reserve themselves." This is called presume consent, and it would significantly increase the supply of organs if it was adopted. But it can only be adopted legislatively, and that's a pipe dream. There is widespread opposition to the idea, so there's no reason to think it will be enacted. This underlines the importance of LifeSharers, which uses an already-legal incentive-based system to increase gthe supply of organs.

Calli Arcale said she didn't think what LifeSharers is doing is legal. That is incorrect. LifeSharers members use directed donation, which is legal under federal law and the laws of all 50 states, to offer their organs first to other LifeSharers members. By the way, UNOS moves live organ donors up the waiting list if they need a transplant later in life. UNOS should do the same for people who promise to donate after death.

Bongi wrote that organs are not assets, "they weren't ours to give and they aren't ours to take without specific authorization". If that's true, are they ours to withhold after death if they can save lives? I think not.

rlbates said...

Nice discussion. I say you can have all mine, I won't be using them and hopefully my family won't need them. They can fight over my quilts.

Sid Schwab said...

Dave: I'm pleased you found my post, and glad you've taken the time to comment. It's a worthy discussion. I hope you read the earlier post of mine to which I linked in this one: I think you'd like it.

ramona: put me down for one, after your family gets done fighting.

Stethoschope said...

Dave,

While no religion forbids donating organs, some religions, or factions within certain religions, debate the concept of "brain death", so for practical purposes, it is one and the same. Also, when speaking about religion, we can't choose to include religions and exclude personal religions and convictions - How are they different? Are the moral guidelines, or specific personal subsets in which a person believes, which may include not donating organs any different than an official religion? I'd claim they are not.

Also, to defend poor Bongi from having to suffer for my beliefs, I was the one saying organs aren't ours to take without specific authorization, and I would definitely claim they ARE ours to withhold. A man comes into this world with only so much, but that so much is his. If we start showing disregard for what happens with someone else's "biological remains" where does it stop? Perhaps he doesn't need to be buried respectfully, because they're just remains? Also, where does the line separating our children from our lungs pass, exactly? I'm exaggerating on purpose, but one step taken today without caution is a slippery slope in the future.

But the most problematic of all ideas, as I've stated, is finding ourselves giving the organs according to something besides pure medical need. Do we give the lung to someone who won't donate but will definitely die without it, or to someone who will donate, but just MIGHT die without it? And what is might, exactly? 90%? 50%? 25%?

In this case, how is withholding an organ from a person in need to give to a person in lesser need any different, in essence, from a death sentence?

Considering my arguments, I feel this cannot be stressed enough - I am all for organ donations and am a donor myself, but we need to carefully measure our steps and continue to act through explanation and education, always making sure we do not stop doing what is right while attempting to do what is good.

Dave said...

Stethoschope:

Do people who won't donate because they don't agree with the concept of "brain death" refuse to accept organs donated by people who suffered "brain death"? I really doubt it.

If you defend those who have "personal religions and convictions" that refuse organ donation, then you should likewise defend those who have personal convictions that permit organ donation and want their organs to go to other organ donors. How can you defend A's right to donate to nobody and attack B's right to donate to everybody with a preference for other organ donors?

You say that organs are ours to withhold. If that's true, then they are ours to give in the way we see fit.

It's not fair to criticize LifeSharers because it leads to organ allocation not based on pure medical need, because organs are not allocated based on pure medical need. Lots of other factors determine who gets the next organ -- age, location, ability to pay, and time spent waiting are just some examples.

The best way to help the people who need organs most is to increase the supply of organs. Allocating organs first to registered organ donors will do just that. Shouldn't saving the greatest number of lives be the goal of the transplant system?

Stethoschope said...

Dave,

First of all, it is quite possible that the same person won't accept organ donations, just like certain people don't accept blood donations, even when their life may hang in the balance. Regardless, however, the very point of origin for my argument is that we do not morally judge the donor or the person in need of a transplant - we give the organs only based on medical need, and nothing else. Regarding the other matters you brought up which comprise the various factors influencing a donation, age and time waiting are doubtlessly part of the medical condition, while I'm not quite sure regarding location, if the meaning is the fact that you need the donor to be within range considering flight time etc. for the organ to still be eligible for donation, that's a matter of chance not of us have anything we can do with. Regarding money, well, I admit I don't really know much regarding healthcare in the U.S, but I'd like to think that when it comes to life threatening situation, organs should be available based only on severity of condition - but again, I won't expound on what I don't know.

Regarding donations only to specific groups - I claim we should deny donations that come with any strings attached. First of all, donations with strings attached are not donations - Do we accept the offer if someone is willing to donate if we pay him, or his next of kin for his organs? We most definitely should not. Likewise, accepting donations with strings attached sets a dangerous precedent - What if the next string attached is the one of race or religion? In cases such as this, we should painfully decline, if we can find no other option.

Last but most certainly not least, I do not criticize any organization here, mostly because I did not do the required research, I am simply arguing a matter I have deep feelings for. I've no question in my mind your organization, among many others, has nothing but the best of intentions, and have nothing but admiration for volunteers who give their time and effort for other, often anonymous, people in need.

Regarding the amount of lives saved, I agree with you it is our main goal. Lives are our most valuable asset, but I repeat my earlier claim - We need to make sure we do not stray from "Right" while seeking to accomplish "Good".

Buckeye Surgeon said...

If you tell a dialysis patient that they will go higher on the List if they agree to donate their own organs, the patient will say: sign me up. Everyone will do it. Then you're right back where you started: too few organs for too many patients. I think a hundred years from now we'll look back with pity on our current era as an inexplicable time when patients died before they could get a life-saving transplant. Yet another example of ideology/religious based decision making obstructing the alleviation of suffering.

Dave said...

buckeye surgeon:

The point is to give people an incentive to agree to donate before they find they need a transplant. LifeSharers has a 180-waiting period. As a member, you don't get preferred access to the organs of other members until you've been enrolled for 180 days.

Dave said...

stethoschope:

You wrote that "my argument is that...we give the organs only based on medical need, and nothing else." Do you mean we should do that or do you mean we are doing it that way now?

Dave said...

stethoschope:

You wrote that we should deny donations that come with strings attached. Donations with strings attached are very common. Lots of people donate money to charities or universities for specific purposes.

You wrote that donations with strings attached are not donations. In this specific case, donating with strings attached is a better way to donate. Donating your organs when you die is a wonderful thing, because it saves lives. Donating them with a preference to registered organ donors is an even more wonderful thing, since it saves lives and it creates an incentive for non-donors to become donors.

As for donations with strings attached relating to race or religion, such donations are not legal. Donating first to registered organ donors, as practiced by LifeSharers, is legal. It's also ethical, because it increases organ supply and makes the system fairer.

Stethoschope said...

Dave,

First of all, regarding the way things are done currently - I must admit I have no idea and as most of our discussion seems to revolve around the American healthcare system, I've limited ability to educate myself.

Regarding donations with strings attached, I'll clarify - Not ALL such donations are not ethical, but they are very much not ethical when it comes to life saving donations - such as organ donations. I intently disagree with your statement saying that donating with strings attached is the best way to donate - It is by far, in my opinion, not only far from the best way, but a way we should stay away from. Regarding laws, well, that is mainly my point - Now it is against the law, but allowing any grapples to hook onto our well meaning intentions now may set us on a slippery slope as we head towards the future. We would like to believe we live in a society where all laws are moral, just and can easily be maintained, but as this is not the situation, and we cannot count on it becoming the situation in the (rational) near future, I don't set my stock on laws to do my thinking for me, or count on them to keep me on their good side at all times.

Finally, I think that you'll agree with me that we have more or less come to the end of our productive discussion regarding this matter. We shall simply have to part ways, until our gracious host next allows us such fertile grounds (Thanks Sid!) knowing that while we agree about our desired end result, our preferred ways for arriving at it are different.

Cheers,