Hicks: New Organ-Sharing Guidelines May Prompt National Conversation

[okarol]

Hicks: New Organ-Sharing Guidelines May Prompt National Conversation
Published: Wednesday, 21 Sep 2011 | 9:35 AM ET Text Size
By: Nancy Hicks
Senior VP, Ketchum

The United Network for Organ Sharing (UNOS) recently released organ procurement guidelines for public comment that are sure to prompt ethical debate.

In the first overhaul of the system in 25 years, UNOS announced younger, healthier people will be given priority preference for kidneys over older, sicker people.

This is a major change over the previous system which favored patients on a waiting list – first come, first served – irrespective of age or health condition.

The impetus behind the new system is to maximize the number of years of the kidney by pairing it with the health status of the recipient.

In a Washington Post article, Kenneth Andreoni, associate professor of surgery at Ohio State University and chair of the UNOS committee reviewing this policy, said, “We are trying to best utilize the gift of the donated organ. It is an effort to get the most out of a scarce resource.”

While this step is hailed by some surgeons, bioethicists and patient representatives as an improvement in kidney distribution, others worry it could alter the pattern of organ donation and penalize middle-aged and elderly people. Bioethicist Lainie Friedman Ross at the University of Chicago noted in the Post article, “There are a lot of people in their 50s and 60s … [who] could have 20 or more years of life. We are making it harder for them to get a kidney that will function for that length of time. It is age discrimination.”

Is this age discrimination or is it making the best use of a scarce resource?

There are 87,000 Americans on a waiting list for a donor kidney, and only 17,000 will get one each year. How to make the best use of a life-saving, but limited, resource is at the heart of a broader ethical debate in healthcare. Arthur Kaplan, bioethicist at the University of Pennsylvania, tells the Post, “It’s a big shift …This moving away from the save-the-sick-strategy to try to get a bigger yield in terms of years of life saved.” He notes this approach could have implications about allocation for other medical resources such as expensive cancer drugs and ventilators in emergency situations.

This brings up one of the most explosive words in the healthcare lexicon: rationing.

Most health professionals acknowledge that scarce resources will be, by necessity, rationed. Yet this concept is anathema to the American public. Who wants to deny their grandmother a life-extending cancer drug, even if that drug costs $100,000 a month and extends life by three months? Research shows most Americans want everyone to have access to organs, with no restrictions on age or health. Yet this national generosity regarding access to resources is at odds with the availability of these resources.



The difficulty in addressing this issue is the very volatility of the “R” word. Opponents of health reform used the specter of rationing to argue against the Affordable Care Act. It has become almost impossible to have a balanced conversation on this topic and yet it is increasingly urgent that we do so. With an American turning 50 every seven seconds, the baby boomers are poised to represent 45 percent of the population by 2015, a statistic that is threatening to overwhelm the healthcare system.

Allocating medical resources will be a national priority – one that healthcare professionals, bioethicists and the public will all weigh in on. The first step in addressing these issues is to stop demonizing the “R” word and admit that we have to make difficult choices – choices that will not please everyone.

Whether you agree or disagree with the new criteria set forth by UNOS, I view it as an attempt to use limited resources in a way that will do a maximum of good. They should be applauded for the courage to tackle this difficult issue despite the chorus of critics. We can only hope that more healthcare professionals will follow UNOS’ lead in addressing medical allocation issues with an eye towards moral and practical solutions. It is a conversation that will engage all levels of society, and one we cannot afford to put off.

http://www.cnbc.com/id/44598811

[MooseMom]

Why is there this underlying assumption that "older" is synonymous with "sicker"? 

And who can foretell the future?  Who can say with any certainty that an older recipient will die before a younger one?  The older one may be more careful with sun exposure while the younger one may die of skin cancer.  We don't know.  I can understand wanting to get the most years out of a donated kidney, but we are dealing with people, not merely with kidneys.  Donated kidneys are precious, but people are more so, and this is what seems to be lost in this discussion.

Is a daughter worth more than a mother?  Is a young son worth more than a husband?  Does anyone really want to make those decisions?

[okarol]

No where does UNOS plan to add "sicker" to the allocation process for kidneys.
It has always seemed crazy to me that an 75 year old patient could get the kidney of a 10 year old, and a 20 year old patient could get the kidney of a 50 year old. But that often happened because of wait time, pure and simple.
Over 62% of patients on the wait list are over 50 years old. But only 38% of the deceased donors are over 50 years old, so there's never going to be a perfect formula. But the idea is to find a way to get the donors and recipients to be closer in age, so they get the best use out of the organs they have. This may mean they'll be taking kidneys from older donors too. I don't think it means choosing one group over another. The goal is to better match those who are waiting, if I understand it correctly. Until they try it they won't know how it works.

[MooseMom]

As I understand it, pediatric patients are treated differently, anyway, so I doubt that a 75 year old would get the kidney of a 10 year old.

I understand that the goal is to better match the age of the donor with the age of the recipient.  Someone is going to lose out no matter which new program is put into place just like people lose out now.  I know we do not like the whole idea of rationing, and the author points out that we need to get over our fear of it, but the waiting list as it is now...ie first come, first served...is in and of itself already rationing.

The real tragedy is that we shouldn't have so many people succumbing to ESRD in the first place, and if we had a policy where everyone had access to preventative health care, there wouldn't be the higher numbers of people on dialysis/waiting lists.  If every American could be checked annually for hypertension and diabetes and get treatment for just these two maladies, I'd bet the north forty that the number of people wanting a new kidney would decrease tremendously.  But no...our society isn't intellectually nimble enough to spend more money up front so that less would have to be spent later.

So instead of making sure that all Americans have access to basic healthcare, we have to turn ourselves into ethical pretzels in trying to better match kidneys to recipients.  And not only that, but we can't even agree on an "opt out" policy because it infringes on our freedom to be lazy toads or some such excuse. 

Another brick in this problem is the fact that patients die on standard dialysis.  If you give more people the opportunity to have more dialysis, then maybe there will be some who will opt to stay on dialysis instead of risking surgery and the awful meds that follow.  Some "rationing" is intentional.  I don't understand why dialysis clinics can't open on Sundays.  The body doesn't magically stop producing toxins and fluids just because it is Sunday.  My local grocery story is open on Sunday, so why can't a dialysis clinic that offers life-saving treatment be open every day, too, so that patients could get more dialysis and the wait for a kidney wouldn't be so catastrophic?  All of these issues are bound together.  You can't really look at the UNOS policy in isolation.

[okarol]

As I understand it, pediatric patients are treated differently, anyway, so I doubt that a 75 year old would get the kidney of a 10 year old.

Pediatric patients get an extra point, and there are not a lot of kids waiting on the list (only 1% of the patients wait listed are under 18 years old.) All ages over 18, including 75 year olds, who have been waiting the longest, get the organ that matches their tissue. There's no age criteria in the present system. And it happens, I know from speaking to older folks who have gotten kidneys from children, sometimes they get 2 kidneys from an infant. The idea is not to punish old people, but to give a kidney closer to their age, so that a 30 yr old donor kidney would go to a 25 year old instead of a 70 year old. And a 50 year old kidney would go to someone older, because it will benefit a 75 year old, whereas the 30 year old kidney would give more years to a younger person. They still have to be a match tissue wise, this is not changing. I don't see it as a disadvantage to anyone, but people carry the idea to the extreme thinking only young people will get a kidney.

[MooseMom]

Well, then hopefully the new criteria will work and the resulting experimentation will not result in needless deaths.  There will always be those exceptions to the rule, so I don't doubt that a 75 year old somewhere at sometime in someplace got infant kidneys.  The real problem comes with people in my age range...early 50s...  I'll be one of the group that is going to essentially be experimented on.  But I already know that women of a certain age have no more value in this society, and UNOS is underlining that fact.

I'm seriously considering getting optimal dialysis and foregoing the whole transplant business because I don't think I want to live under this cloud that constantly says, "You don't deserve that kidney because it should have gone to someone younger.  You don't deserve a chance at life because yours is almost over, anyway."

[okarol]

ARGH! We can discuss this when I see you. It's NOT going to the younger - it's going to the closer age!
If you look at the data on the OPTN site you'll see that MOST recipients are between 35 and 64 years old.

[MooseMom]

ARGH! We can discuss this when I see you. It's NOT going to the younger - it's going to the closer age!
If you look at the data on the OPTN site you'll see that MOST recipients are between 35 and 64 years old.

Then why does the concept of "age discrimination" ALWAYS ALWAYS ALWAYS accompanies this discussion? 

I understand that it is the goal for kidneys to go to "the closer age".  I've read the UNOS proposal.  And if that's how it works, fine, but since when do we fully trust anyone and everyone at UNOS?  I actually agree with the intent of the proposal and its goal, but I don't know if it will work in practice.  It's still rationing.  It's ALL rationing.  But I am not real comfortable with extending the waiting period for anyone for any reason.

It's not something I think about much because I still have many, many years on the waiting list, and I don't really believe that any new UNOS rules is going to make my situation any better, so I'm going with plan B which is "no transplant at all".  No one has my best interests at heart, and I surely don't expect UNOS to be in my corner.

[okarol]

ARGH! We can discuss this when I see you. It's NOT going to the younger - it's going to the closer age!
If you look at the data on the OPTN site you'll see that MOST recipients are between 35 and 64 years old.

Then why does the concept of "age discrimination" ALWAYS ALWAYS ALWAYS accompanies this discussion? 

I understand that it is the goal for kidneys to go to "the closer age".  I've read the UNOS proposal.  And if that's how it works, fine, but since when do we fully trust anyone and everyone at UNOS?  I actually agree with the intent of the proposal and its goal, but I don't know if it will work in practice.  It's still rationing.  It's ALL rationing.  But I am not real comfortable with extending the waiting period for anyone for any reason.

It's not something I think about much because I still have many, many years on the waiting list, and I don't really believe that any new UNOS rules is going to make my situation any better, so I'm going with plan B which is "no transplant at all".  No one has my best interests at heart, and I surely don't expect UNOS to be in my corner.

I have your best interest at heart. 

[tyefly]

MM    its hard to make a decision about transplant now....  You havent even started Dialysis yet....that in it self my change your mind....depending on what type of dialysis you will be about to do or what they will allow you to do.....  just a thought...

When I was in the hospital waiting on transplant which was a whole day .... I had to dialyize one final time....  I did it in the hospital dialysis unit.....  as I was sitting there two kids came in... they were about 10 to 13 years old...one girl and one boy.... they were hook up....  I watch closely as I have never seen kids dialysize before... I was sitting there thinking ....  wow   I am getting a kidney  and look at them  .. whats there story .... they should have this kidney before me.... they have their whole life in front of them....  I spent three hours thinking about it.... into a hour of my dialysis a inmate came in with two guards....  I am thinking will he get a kidney before the kids.... should he?    should I say something to someone about this kidney that I am getting...  is that crazy...would I give up the kidney that is a perfect match for me to give to a 10 year old....some one I dont even know...  I think I would....  but I didnt and I am sure I could of said no to the kidney but who knows who it would of gone to... I was only concerned about the kids.... I thought about this the whole time I was in the hospital....greatfull that I did get a kidney but in the back of my mine I kept thinking about the kids.... and even today...while reading this posting  I think about it.... 

 I think that kids should be about to be on top of the list.... I think that kidneys that are perfect could go to the rest of us say 60 and older..... ( note I am only 54  so I remain on the list...LOL )  I am not so sure about people who are 75 and transplants..... I guess it would depend on their health and quality of life....  I am all for UNOS makes some changes to put kids and young adults at the top of the list.....

[MooseMom]

I think we all agree that young children should get first shot at a kidney especially if the donor happens to be young, too.  But what about people who are older who have young children to care for but can't because they're on dialysis?  Everyone has a story.  Everyone has value to someone.  Most people on the waiting list have someone who is depending on them.  If a 50 year old man needs a kidney because dialysis means he can't work to earn money to send this children to college, then who is to say that his life is less valuable simply because he is no longer a child?  I understand the idea that children are sacred, but what about the parents that take care of them?

When any of us get a kidney, I'm sure there are many other patients who we might think are more "deserving", but what someone "deserves" shouldn't enter into the equation.  Life just doesn't work that way.  None of us deserve to have kidney failure, but we do.  I'm sure, tyefly, that the image of those two dialyzing kids will always stay with you, but I hope that does not decrease the joy you have in getting a new chance at life.  Nothing about any of this is easy or clear cut.  We all want to live at best and avoid more suffering at least, but not much of all of this is under our control.  We're all just unlucky sods with shortened life-spans.

If UNOS DOES make changes and puts kids and young adults at the top of the lists, I hope that our society will be better at financially supporting the older patients who cannot work and feed their own children or look after their senile parents.  These people in the 50 year old range often are the caretakers of both the younger AND the older generation.  We might not have as many years to live, but our responsibilities outweigh those of kids and young adults.

My point is that people often don't think about the long term consequences of their decisions, and what looks on the surface to be "good for the whole" turns out not to be.  While I do think I understand UNOS's goals, I am suspicious.  It is still rationing, but it is tarted up to look like it is "good for the whole", which is all too often the same mindset we see in dialysis clinics.  What is advertised as being in the patients' best interests is just a scam. 

I just do not trust anyone these days to make life and death decisions, and I think we have to be extremely careful when reviewing the changes.

I guess, also, we talk a lot about giving the best chance for the children, but as a society, we don't walk the walk.  Our education system is horrible, and 16% of our children live in poverty.  God knows how many of them don't have insurance.  We think we're wonderful when we want to spare the lives of children, but we balk at educating them or keeping them healthy in the long run.

Sorry, I'm ranting, but I just smell a rat in all of this.  I've had enough of trusting anyone in the medical community, and I distrust their motives.  I really hope I am wrong because I truly do see the sense in matching the age of a donor to a recipient.  But our demographics are rapidly changing, and I am not sure how this will all work.  I'd hate to see young adults end up having to wait longer because there are not enough donors in their age range.  I can see that happening, but then again, maybe it will all be wonderful and soon no one will have to have transplants because we'll be able to just grow kidneys in a lab somewhere.

[okarol]

Kids get preference now. That won't change. Tyefly, you were a tissue match, that's why you got the call.
"Deserving" is not a criteria. Now that would be a huge ethical debate.
No one is throwing out the 50 year olds as not worth saving.
Age is just an added denominator.
The best way to control the outcome for people who want a transplant, is to bring their own living donor in.
That way the people who do not have that option have less people in front of them on the list.

[okarol]

We've discussed this for years, it comes up every few months when another related news story surfaces.
http://ihatedialysis.com/forum/index.php?topic=1735.0

[tyefly]

I certainly enjoy  MM.... and all the input she has here at IHD..... MM has shared so much here......  If we could vote on best new person in the last year.... I would vote for MM...  we have many who have come and gone for various reasons...  I hope MM stays with us forever... We need more people like MM to share and enlighten us....

[okarol]

I certainly enjoy  MM.... and all the input she has here at IHD..... MM has shared so much here......  If we could vote on best new person in the last year.... I would vote for MM...  we have many who have come and gone for various reasons...  I hope MM stays with us forever... We need more people like MM to share and enlighten us....

  I agree, she always adds to a discussion - makes me think -- I like that! 

[MooseMom]

Kids get preference now. That won't change. Tyefly, you were a tissue match, that's why you got the call.
"Deserving" is not a criteria. Now that would be a huge ethical debate.
No one is throwing out the 50 year olds as not worth saving.
Age is just an added denominator.
The best way to control the outcome for people who want a transplant, is to bring their own living donor in.
That way the people who do not have that option have less people in front of them on the list.

I agree with all of this.  I'm working on the living donor thing, but no one is on the horizon, but I'm still making the effort.

I'm just feeling frustrated in general.  And I have to travel to Chicago for a cardiac consult when last year I was able to do it at the facility near my home.  I have to get leave the house at 6:30 AM and fight the morning commuters just to make a 9AM appointment that really isn't necessary.  Each year the goalposts seem to change, and no one thinks about how those changes affect their patients. 

And thanks for the kind words.  How did y'all know that was just the sort of thing I needed to hear.