First Do no Harm: The Living Renal Donor Dilemma

[Hemodoc]

By Peter Laird, MD

Renal transplant offers the benefits of increased survival, normalized diet and life style and freedom from the burdens of dialysis. Since the first successful renal transplant in 1954 when Richard and Ronald Herrick, living donor renal transplant is the recognized gold standard renal replacement therapy for patients with ESRD. Many of the early renal donors have enjoyed long, healthy lives after donation. Ronald Herrick is no exception. He lived to the age of 79, dying in 2010 from complications of heart surgery.

Initially, candidates for renal donation underwent stringent physical examination and had to be free of any chronic illness that could lead to renal disease or cardiovascular complications. Today, as the demand for renal donation increases and is popular in the press and television news stories, criteria for renal donation is now much more relaxed. Early studies of the safety of renal donation appear to imply normal or even longer than average survival compared to the general population. The difficulty is that no one has a complete record of all renal donors since they are not followed in most centers past the first year. Some new data is now showing a significant decline in renal function in the first year after living renal donation that gives pause to the rush to increase this source of renal grafts:

Renal Function Declines in Living Kidney Donors

At one year post-nephrectomy, 131 (78%) donors had a 25% or greater increase, 27% had a 50% or greater increase, and 31% had a 0.4 mg/dL or greater increase in plasma creatinine compared with their pre-donation values.

In addition, the researchers found an association between mean arterial pressure (MAP) and a plasma creatinine rise of 25% or greater one year post-nephrectomy. Each 1 mm Hg increment in MAP at the time of donation was associated with a 6% increased risk of having a 25% or greater increase in plasma creatinine.

“There are few data addressing post-nephrectomy kidney function in contemporary living donors,” said Julie Lin, MD, MPH, FASN, senior author of this study. “We were surprised to find that relatively high proportions of donors met established clinical definitions for lower kidney function whereas the general expectation has been for higher levels of recovery at one year. Donors deserve quality information on the expected course of kidney function change after nephrectomy.”

The entire debate over payment for renal vendors is predicated on the belief that living donation renders no harm to the donor. The evidence from the illegal black markets from poor renal donors in Pakistan, India and Iran is far from reassuring with no net financial benefit to these people after loss of ability to work is calculated into the final analysis. Ronald Herrick gave his brother the gift of life and both lived exceptional lives.  However, in an open, regulated, legal market for renal donors, many will be motivated by the immediate financial reward without much thought on how it may change their own health and well being. For the 1 out of 3000 that die during renal donation, no amount of compensation accounts for their loss.

The irony of continued calls for payment for renal donation is that we are now finally seeing the true promise of altruistic renal donation where many transplant chains are initiated by an altruistic donor. The power of love for our fellow man is the true message of the Ronald and Richard Herrick story. The power of the love of money by starting a regulated open market tempers the historical relevance of this truly modern medical miracle. The simple truth is that no regulated market will ever meet the demands of our nation that has so dismally failed to prevent obesity, HTN and diabetes that all lead down the path of end stage renal disease. Until these public health epidemics are controlled, the contrivance of a regulated organ market will be little more than a band aide at best, but it may also be the opening of Pandora's box. As in all things, first, do no harm.

http://www.hemodoc.com/2011/12/first-do-no-harm-the-living-renal-donor-dilemma.html

[MooseMom]

The way to reduce the volume of the calls for living renal transplantation is to prevent ESRD in the first place, as you say.  There is more information out there than ever before about the dangers of obesity, poor diet, lack of exercise and other behaviours that lead to hypertension, diabetes and, eventually, ESRD.  Yet we are unhealthier than ever before.  How do you explain this?

We as a nation seem to conveniently ignore the idea of social responsibility when it comes to making our choices. 

With federal spending cutbacks being demanded, you can forget about any federally funded programs that might seek to educate people about their health.  So, there will be no education, no investment in preventative care, no spending on getting good food to people who do not have the resources to buy fresh foods every day of the week.

Yes, we as a nation have failed to curb our health woes, but there is nothing to lead me to believe that in the current political climate, we will collectively choose to protect our society's health by protecting our own.  We live in an age where we refuse to do anything that is inconvenient or carries a whiff of sacrifice.  If I want to eat crap all day and drink Big Gulps whenever I like, who the hell are you or the federal government to tell me that this may be a bad choice for me?

The "power of love for our fellow man"?  Really?  I hate to sound cynical, but I'm sorry, this doesn't wash with me.  How often do we read stories right here on IHD about our members being treated poorly despite or because of their disease?  How about Cordelia whose live-in relative is on her case for wearing orthotic shoes that make too much noise?  Do you really think that altruism and charity are going to solve this problem?  If that's the case, why hasn't it already?

This is like saying that [Ron Paul] the federal government shouldn't get involved with health care because we historically have had churches and charities to fill that role.[/Ron Paul]  Please find me just ONE patient that has a charity or a church pay for all costs incurred by ESRD.  What church pays for someones dialysis?

The role of charity and altruism is, in my opinion, vastly overrated when it comes to treating people with ESRD.  To put a very sick patient at the mercy of someone else's altruism (or lack thereof) is cruel.

I don't really like the idea of a regulated market, as I've said before, but I like even less the idea that what we have in place now is going to be adequate for the onslaught of ESRD that is headed our way.  If people refuse to take care of themselves, then why do you expect they will show compassion to anyone else?

I don't agree that "many" chains are started by altruistic donors.  When they occur, we hear about them in the news precisely because they are still so uncommon.  Once they become truly commonplace, we will stop hearing reports about such miracles.

If there is a regulated market, it should be the duty of the transplant center to ensure that potential donors ARE given information about how their donation might impact their health.  If there have been no controlled studies, the tx center should still at the very least raise the topic and give as much information as they have and encourage the donor to think long and hard about it.  For any potential donor to be allowed to proceed without being made aware of possible long-term risk is unconscionable.

[cariad]

Peter, this sounds to me like you don't like the idea of live donation in general. I don't understand the point about the early donors living a long time, as we don't really know about the later donors yet, do we?

I disagree that criteria have been relaxed for live donors. My experience has been precisely the opposite. My original donor (still alive) had a terrible family health history and has outlived his own father by a number of years. I am not sure what, if any, screening he underwent to donate. None has ever been mentioned to me beyond the 'best match' answer. My current donor underwent quite a few physical tests, plus the psych eval which I do not think was part of the original donor screening. (Original Donor probably did have to undergo a psych eval years later when he donated bone marrow - the hard way - 20 years later.)

I agree with you on your distaste toward any sort of market for donation, but we have very different issues with that proposal. I further agree that we need to make sure that donor's health comes first.

I'm confused, MM, I thought you liked the idea of a tightly regulated market for organs?

Am currently reading transplant anthropology and as usual finding it outdated, bizarre, or just plain wrong. This has put me in an argumentative mood, but happily I will have the opportunity to state my case to the prof on Tuesday. MM, I may ask your permission to use a point or two that you've raised in another thread (not about selling organs). I'll send you a PM and explain more if I decide to go this direction with the paper.

I know this is controversial (though I do not understand why!!!) but obesity makes more sense as a symptom of disease, not a cause. They correlate, that does not mean in any way shape or form that one can say that one causes the other. Poor diet (whatever that might mean, as it's so individual) will certainly contribute or cause ill health, but not everyone with a poor diet is obese or even close. Lack of adequate exercise also contributes to poor health, but again, plenty of thin people do not get enough exercise. OK, I just had to reiterate that. I look forward to the comments questioning my intelligence/sanity/ulterior motives.

[Hemodoc]

There is no national registry for organ donors. The story of organ donors is quite unknown in many ways. The medical literature itself speaks of relaxing donor requirements and accepting people with history of HTN, Diabetes and other conditions that in beginning of this venture were all disqualifying factors along with age.

I readlily confess to my bias on transplant since I have declined that option for myself due to prior history of cancer and radiation therapy as well as my recent episode of a very early melanoma. On the other hand, I did consider transplant prior to the melanoma discovered on my request for a skin cancer screening with dermatology before being listed. My wife and daughter offered their kidneys as well as my step-son. In evaluating their offers, I came across a complete lack of understanding of the long term consequences of renal donation. Coupled with the knowledge that with daily dialysis, survival rivals cadaveric transplant outcomes. So yes, I declined transplant not only due to my own health issues, but that of my family members as well.

Lastly, trasnplant folks NEVER, well almost never counsel candidates on the risk of dialysis using daily dialysis or nocturnal daily dialysis figures. They compare only the adverse outcomes of traditional in-center dialysis to that of transplant. Interestingly , no one has ever done a randomized and controlled trial to see how well transplant folks really do compared to optimal dialysis strategies and it is not likely a study that will ever be completed. The transplant candidates are one of the most highly selected patient groups in medicine. Many of the disqualifiers for transplant are not in the least a disqualification for daily dialysis.

To date, I have not had any major complications of dialysis thanks to the Lord first of all. I am sufficiently scared of cancer more so than the dialysis even the drudgery of daily dialysis that I would truly need some astounding survival advantage with that alternative. Just my own preferences. In addition, with my prior radiation treatment, I am already at risk of osteonecrosis of the hip which is a very common complication of transplant from the steroids which are always quite high at the beginning of the graft implant. I HATE being cut on and that is another motivator to avoid that route. Adding it all up in my mind, my choice is to avoid that option unless I am running into issues with dialysis that make this option untenable.

[fearless]

For myself, I find that when dialysis is routine, and I'm able to concentrate on the finer things in life, I am indifferent to transplant, and wouldn't like to risk putting anyone in danger of decreased health or shortened life by taking a kidney from them.  But when things start to slide, or because of some change or problem that requires me to devote every minute of the day to dealing with the fact that I'm dead except for dialysis, then I really don't care too much about anybody else's life and I just want my own back.

[edersham]

As usual Cariad you are spot on.

Ed

[MooseMom]

I'm confused, MM, I thought you liked the idea of a tightly regulated market for organs?

No, I actually hate the idea, but I think it may be necessary if we are truly serious about reducing the number of people waiting for organs.  The bottom line is that the lists are growing but the number of organs available for transplantation are not keeping up with demand, and we have to decide if we are going to seriously address this problem or if we're just going to sit around and keep talking about it.  Doing nothing will result in more people dying or more people waiting a longer time on dialysis, and I am not sure that it is ethical to let that happen if we do not have to.  I personally do not believe that relying solely on the altruism of others is going to make more organs available.

I'm also rather uncomfortable with the paternalistic idea that the monolithic poor aren't to be trusted to make good decisions for themselves.  I absolutely abhor the idea of anyone being exploited, especially those who are having financial difficulty and those who are ill and depend on a machine to live.  But there comes a time when you have to trust people to make their own decisions in life.  Perhaps I am pro-choice in many ways.

MM, I may ask your permission to use a point or two that you've raised in another thread (not about selling organs). I'll send you a PM and explain more if I decide to go this direction with the paper.

Sure.

I know this is controversial (though I do not understand why!!!) but obesity makes more sense as a symptom of disease, not a cause. They correlate, that does not mean in any way shape or form that one can say that one causes the other. Poor diet (whatever that might mean, as it's so individual) will certainly contribute or cause ill health, but not everyone with a poor diet is obese or even close. Lack of adequate exercise also contributes to poor health, but again, plenty of thin people do not get enough exercise. OK, I just had to reiterate that. I look forward to the comments questioning my intelligence/sanity/ulterior motives.

I agree.  Many people with a poor diet are malnourished, not obese.  You are right.

[MooseMom]

Hemodoc,  I understand why you have not looked deeper into transplantation for yourself, and considering your history, I don't blame you.  You are the one who will have to live with the consequences of your choices, and you don't want to have to live with the fear of cancer.  Don't choose to live with fear if you don't have to. 

[Hemodoc]

Hemodoc,  I understand why you have not looked deeper into transplantation for yourself, and considering your history, I don't blame you.  You are the one who will have to live with the consequences of your choices, and you don't want to have to live with the fear of cancer.  Don't choose to live with fear if you don't have to.

Actually, I did go through much of the requirements for transplant listing including, thank you my colleagues, a colonoscopy, a cystoscopy, informed consent for myself and my wife, etc. The only other test I needed to do was a Thallium treadmill to evaluate for coronary artery disease.

I stopped after the melanoma diagnosis. I have been cut on twice in my life for very early and thankfully curable cancers, but I don't relish any more. Just my personal experience.

I am not against living donor transplants. Never said that, never will. I am a proponent of true informed consent, something that is greatly lacking in the renal replacement realm for both transplant and dialysis options. This is a complete anomaly from my experience with informed consent as a physician where I gave informed consent with risks, benefits and alternatives for treatments of the common cold. Yet, the MAJORITY of patients in need of renal replacement therapy seldom learn the facts of the options presented, whether HD, PD or transplant. A bit of truth in advertising is something that the nephrology field needs to consider. It is not there today for sure.

For those that truly understand the risks of living renal donation and wish to proceed out of altruism or love of that person, that is a personal choice. The surgeon is the final arbiter of that process since it is his/her ethical obligation to first do no harm.  Sadly, we truly don't know the real natural progression of the average renal donor. That data simply does not exist in any meaningful manner due to the absence of long term follow up in the majority of cases.

That places the entire renal vendor market an ethical quagmire that should not be considered at this time, nor anytime in my own personal opinion.

[MooseMom]

I agree that it is probably not possible to have true informed consent for much of anything renal.  There is still so much we don't know in both the fields of transplantation and dialysis.

How do you feel about some sort of financial compensation for families of deceased donors?  Do you think that would encourage more families to consider donation if a loved one died?  Would it encourage states to set up an opt-out system?  Or do you see yet another ethical quagmire?

[Hemodoc]

I agree that it is probably not possible to have true informed consent for much of anything renal.  There is still so much we don't know in both the fields of transplantation and dialysis.

How do you feel about some sort of financial compensation for families of deceased donors?  Do you think that would encourage more families to consider donation if a loved one died?  Would it encourage states to set up an opt-out system?  Or do you see yet another ethical quagmire?

i believe Bill Peckham gave a very coherent answer to that issue on another thread. It opens the door to demanding money for hearts, livers, lungs, etc and putting a price on them. A commodities market in organs is just a very bad idea as just about any ethicist will note.

[okarol]

I have mixed feelings about an organ market.
Everyone gets paid for transplants. Nurse, doctor, surgeon, anesthesiologist, insurance company, pharmaceutical company, hospital and staff, transplant coordinator, social worker, procurement agency (for deceased donors) and the list goes on and on. Oh but God forbid that we acknowledge the risk and contribution of the living donor! Paying them would be unethical....?  Yet without them there's no transplant!
The insurance company or Medicare could fix a rate, just as they do for any other medical service, and pay the donor after the surgery. It wouldn't matter if the recipient was rich or poor, it would be an expense factored in for the surgery.
I think we are learning more and more that kidney donation can have long term effects for the donors. Surgery is a risk, that we know, but no one can predict who will be ok and who will have reduced kidney function. The goal is to save the patient without harming the donor, but we really don't have long term data to see what is realistic.
I read news stories every day. The world is filled with living donors who give the gift of a better life to help patients with ESRD. It really is an amazing thing to see and I don't know how cash would change the type of person who comes forward. It's another thing we cannot predict.

[MooseMom]

It is almost 4 in the morning, and I can't get to sleep because I keep having this nagging thought in my head..."First, do no harm."

We all know that in this country, we have an appalling rate of poor outcomes in dialysis patients, and a lot of that is because our patients just don't get enough dialysis. 

White Castles are open 24 hours a day, every day, but dialysis clinics are not.  They should be open all day, every day, and it is unethical for them not to be.  It is unethical for the medical profession to offer sub-optimal treatment because of cost and/or inertia.

If you believe that big corporations are "job creators", then create jobs by opening more dialysis clinics on a 24 hour basis.  Invest in training facilities so we can have more dialysis RNs.  Let patients have nocturnal dialysis in clinic if they want.  Let patients do SDD there, too.  Patients shouldn't have to have their dialysis at home as the only way to get more and better treatment.

It occurs to me that nephrologists and LDOs that do not offer optimal dialysis in clinic to all patients are inflicting harm.  They may be keeping patients alive, but not for that long and at such enormous cost.  If such a thing as optimal dialysis exists, and we know it does, then offering a patient anything less by definition inflicts harm.  We all know the consequences of inadequate dialysis.  There shouldn't be such a thing as "inadequate dialysis".

So in summary, when we rightfully express concerns about the ethics of donation, either living or cadaveric, we first should be concerned about the ethics of offering only crap dialysis, which DOES inflict harm, to over 90% of the US ESRD population.

And Okarol, that's an interesting point, that everyone seems to make money off transplants except for the donor/donor family.  I had not thought of that.

Now, maybe I can sleep.

[cariad]

No, I actually hate the idea, but I think it may be necessary if we are truly serious about reducing the number of people waiting for organs.  The bottom line is that the lists are growing but the number of organs available for transplantation are not keeping up with demand, and we have to decide if we are going to seriously address this problem or if we're just going to sit around and keep talking about it.  Doing nothing will result in more people dying or more people waiting a longer time on dialysis, and I am not sure that it is ethical to let that happen if we do not have to.  I personally do not believe that relying solely on the altruism of others is going to make more organs available.

I think we are going to have to look seriously at to whom we offer transplants. It should NOT be about income, which is how it is at the moment. Doctors need to be able to say no. I skimmed a recent thread about doctors knowing when to give it up and let nature take its course (though I know that is not always true). This is one of the most depressing issues to me, but as we learn to prolong life further and further, we are going to face deeper and deeper health care crises, financial crises. I don't know. I feel myself falling down the rabbit hole every time we address solutions. I believe the opt-out policy will help in several ways. Sometimes we don't want to rely on altruism, but we don't always get to control every aspect of our lives. This is not the only part of my life where I feel I have to rely on the charity of others. It can be a crap feeling, or I can just see it as a way that others feel good about themselves, so why not just accept that graciously. It does not change reality, but it makes me feel better.

I'm also rather uncomfortable with the paternalistic idea that the monolithic poor aren't to be trusted to make good decisions for themselves. 

What the....?? I am not saying that. Believe it or not, I consider myself to be one paycheck away from joining the ranks of the poor, and have frankly been in this situation for so long I don't remember anything else. I feel nothing but solidarity with the poor and find myself unable to be around high income people at all these days without either a brutal argument or choking back comments that are only going to hurt their feelings. I would say 'we the poor' but I think that's obnoxious because it minimizes their suffering. Right now I am not poor. We still have options, (other than selling ourselves in some way ).
I used to have angry exchanges with the administrators at the refugee centre. One was trying to bring everyone to Jesus, and the other just hated the world, but especially the thieving immigrants with all their weirdo customs. It was the latter that really got my knickers in a twist. I had good relations (I think, anyhow) with the immigrants, they seemed to trust me and want to open up to me. I think the ultra-religious woman had a really good heart, she just did not listen to herself, saying things like "Yeah, they used this new excuse for skipping their classes. They can be really smart sometimes." (Oh dear. You did not just say that.) The other one talked about them like they were all shiftless, unreliable parasites.

I absolutely abhor the idea of anyone being exploited, especially those who are having financial difficulty and those who are ill and depend on a machine to live.  But there comes a time when you have to trust people to make their own decisions in life.  Perhaps I am pro-choice in many ways.

People hide behind the word 'choice'. Two crap choices does not a real choice make. 'lose your home or sell us a kidney, go to war, go into prostitution - nothing but choices here!' MM, you've seen it yourself with statements like YOU have a choice! YOU can always stay on dialysis. See? Aren't you lucky?? A choice. A bona-fide choice. The word choice is used to shut people up.
I had to offer people miserable choices all the time in social work. We had all sorts of ways to talk to people and words like 'empowerment' to make ourselves feel better help the poor.
The psycho woman I used to work with once told me that she was working on a massive homeless project as an anthropologist, and she told me that she was getting the exact same narrative from every single person, and it was basically 'everything was fine, then I did this stupid thing that I should not have done' and that stupid thing was invariably getting sick, losing a job, getting into an abusive relationship, whatever. This woman said she could not understand where this was coming from, that it was deeply disturbing, and she had only started noticing this in the last few years. (this was almost a decade ago). She asked me if it could be coming from the shelters and I said YES. This is the fallout from the whole 'options, empowerment' line that we dished out, although the sentiment behind it has many merits. It can be pushed into a dark place, though.

MM, I may ask your permission to use a point or two that you've raised in another thread (not about selling organs). I'll send you a PM and explain more if I decide to go this direction with the paper.

Sure.

THANK YOU!!!

[cariad]

As usual Cariad you are spot on.

Ed

Aw, Ed! So sweet! Thanks!
(Good to see your posts. On a Christmas holiday, I assume?)

[cariad]

And Okarol, that's an interesting point, that everyone seems to make money off transplants except for the donor/donor family.  I had not thought of that.

That is the nature of medicine, unfortunately. All doctors make money off pain and disease, but in theory, they are all there to help and we don't begrudge them their salary. Some choose to donate their services, too, but you cannot live off of purely donated services.
When I bring my children in for a shot or another medical procedure, it is emotionally rigorous for me. I don't get paid. Yet I am treated like an employee for that time. (Keep him still, stand there, do this, calm him down, ow, he's biting me, make him stop. Stop it, Liot! Let go of your 'new friend's' trachea! and so on.) Without me, those procedures are not happening, those doctors will not be paid, and chinks appear in our herd immunity armor.

Everyone else got paid when I had my two children, I did not see a dime. Personally, I guess I have not been properly indoctrinated into the capitalist mindset, because I recognise payoffs that cannot be measured in dollars. I do not think either of my donors feels like they are owed a great big check. Reimbursement for legitimate expenses would have been appreciated.

Now, maybe I can sleep.

Hope so, MM!

[edersham]

Cariad

Yes, I just finished 24 straight days working. 10 to 12 hours a day in  Alaska (a good thing). Now  I have 24 days in Arizona to refresh, watch college football, have an occasional martini and post on ihd.

Ed

[rsudock]

White Castles are open 24 hours a day, every day, but dialysis clinics are not.  They should be open all day, every day, and it is unethical for them not to be.  It is unethical for the medical profession to offer sub-optimal treatment because of cost and/or inertia.

I love the way you look at the world! AMEN sister!!

xo,
R

[MooseMom]

Cariad, sorry, I didn't mean to imply that YOU have a paternalistic attitude.  Far from it.

I think it is a Medicare requirement that all new dialysis patients are told about the option of transplantation.  I printed off some ProPublica bumph about my clinic, and yes, there is a question asking how many new patients were "offered" transplants.  Of course, the clinic isn't the entity that actually "offers" said surgery; it is the tx center, and just because patients are supposed to be informed doesn't mean they will even read the evaluation stage.  My 76 year old mother was asked if she would like to be referred for an evaluation, and I don't really think they thought she would be a suitable candidate, but I think they were mandated to ask, anyway.

The issue of which treatment is appropriate for a particular patient has always been fraught with risk.  I think we need to seriously look at to whom we refer to dialysis.  For the very sick and the very elderly, dialysis can be torture.  No one likes the idea of withholding treatment, rationing treatment or creating "death panels", but patients, their doctors and the families have to make some very tough decisions.  Neither dialysis nor transplantation are invites to tea parties, so I agree...doctors need to put more thought into how they offer said treatments.

Gotta run, will try to return later with a few more thoughts running in my brain.

[cariad]

Cariad, sorry, I didn't mean to imply that YOU have a paternalistic attitude.  Far from it.

Oh, good, thanks for clarifying. I was beginning to wonder where I had so thoroughly misrepresented myself....

I think it is a Medicare requirement that all new dialysis patients are told about the option of transplantation.  I printed off some ProPublica bumph about my clinic, and yes, there is a question asking how many new patients were "offered" transplants.  Of course, the clinic isn't the entity that actually "offers" said surgery; it is the tx center, and just because patients are supposed to be informed doesn't mean they will even read the evaluation stage.  My 76 year old mother was asked if she would like to be referred for an evaluation, and I don't really think they thought she would be a suitable candidate, but I think they were mandated to ask, anyway.

It may be a Medicare requirement - it should be, in my opinion, to at least make sure patients are aware of the option - but that does not mean that doctors don't have many other tricks at their disposal to keep patients off the list. Did you read that recent article about patients at for-profit dialysis clinics receiving 20% fewer transplants!!!! I just read a bit of anthropology, vetted by my prof for whom I am writing a paper, about the eval process. This is where my interests well and truly lie because I am 100% certain of where I stand and where there could be vast improvement. I don't think the woman did a particularly good job of her article, but then, outsiders are not going to be as wholly keyed in to when doctors are talking crap, are they.

The more we discuss any sort of market for organs, the more I think that we are talking about two different populations here. The altruists/people who know and love those in renal failure and are willing/able to donate, and those who want to turn a quick buck. Make the field palatable to one population and you turn off the other one. I think people in renal failure are in the weakest position to ask for further public funds to pay for organs because we do have options, and people who come off dialysis do not always enjoy long lives with a transplant (even members who have passed away after transplant).

I am planning on using Sally Satel's NYT article in my paper. It is mind-blowing. I cannot possibly do it justice with a summary, anyone interested must read it for themselves. It's hard for me to read it and not shake my head and think 'such a jerk!' I think people with power in our society want to be able to buy organs, because their sense of self does not include accepting charity of any sort, and if they want to preserve their sense of self, by god society should be forced to accommodate them. As JM Coetzee points out, the word charity comes from the Latin 'to love' (same provenance as the Welsh word cariad.) When I have more time, I'll have to tell my tale of woe with our friends who are just absolutely obsessive about not accepting any gifts without reciprocating in kind. It is actually straining our relationship.

Informed consent is another sticky wicket (and yes I am using a sport metaphor without knowing thing one about the sport!) Where does informed consent end? No one can predict what will happen to the individual. When does informed consent become 'needlessly scaring the potential donor'? How much onus do we place on the potential donor to ask the questions that concern them? There have been studies of donors, studies that show that thanks to the screening process, donors actually live longer than the general population. They also have found that donors sustain psychological damage from the process (thanks, Canada!) and since psychological health is not on most surgeon's Great List of Important Things, I think it needs to be put there. If we can minimize damage to the donor from what we know, then why the hell are we ignoring the information that is out there?

MM, agreed agreed agreed on to whom we refer for dialysis. That too! That first! Good point.

[Poppylicious]

A simplistic view (sorry, I get completely and utterly confused by cariad and MMs posts!) from a living donor:

a) The Risks.

I was made aware of all the risks.  I had even mentally prepared myself for death!  Because I'm in the UK we're offered a free check-up every year after donating and, although it isn't compulsory, we are encouraged to attend.  Obviously I haven't had an annual yet but I assume they'll take oodles of blood, my blood pressure and a urine sample (I have my pot sitting on my desk as a reminder).   I will definitely attend, mostly because I want to know for myself that my kidney function hasn't been affected, but also because it will be a way for them to monitor my levels over the years and learn what can happen to a living donor.  I don't know what the future holds, but as a believer in fate I'm happy (although not in the strictest sense) to take what's coming, good or bad.  It's just the way I live.

b) The Rewards.

My reward is having a healthier, happier husband.  From a financial point of view I think the only monies which should be made available (if it was ever decided that living donors - related or altruistic or whatever - should be paid) are those which cover loss of earnings and expenses caused by donation (travelling to hospital, etc.).  I could never imagine actually having done something like this for the money.  I realise that as a wife my views on this are going to be different to somebody who has no relationship with the recipient, and may never even meet them.  As a wife I not only get rewarded for my donation (through the enjoyment of a more 'normal' life with my Blokey) but I also have to live with any consequences of the donation; the constant worries, the tears, the frustrations, the shovelling of pills, the checking of moles, the feeling of failure when things are going wrong ... In a future world where people are paid for donating body parts, would I be paid more than the altruistic donor who may simply breeze in, sell their kidney and breeze back out again, thinking they've 'saved a life' and spending eternity patting themselves on the back for a job well done, but never actually knowing, or even caring about the recipient (after all, they have their money in the bank; it was a simple transaction)?

And, if the kidney fails to take can the recipient get their money back because the product wasn't fit for purpose?   

[MooseMom]

Did you read that recent article about patients at for-profit dialysis clinics receiving 20% fewer transplants!!!! I just read a bit of anthropology, vetted by my prof for whom I am writing a paper, about the eval process.

I saw the headline, but I couldn't bring myself to read it.     I'll have to wait for a time when I'm not feeling so depressed.

The more we discuss any sort of market for organs, the more I think that we are talking about two different populations here. The altruists/people who know and love those in renal failure and are willing/able to donate, and those who want to turn a quick buck. Make the field palatable to one population and you turn off the other one.

This is an astute observation. 

I think people in renal failure are in the weakest position to ask for further public funds to pay for organs because we do have options, and people who come off dialysis do not always enjoy long lives with a transplant (even members who have passed away after transplant).

 

It's true that those in renal failure do have options, but I think it might be unfair to suggest that dialysis is a good option for all people.  Some are able to do do fairly well on dialysis, but others wither quickly, and you don't always know into which catagory a particular patient may fall.  But then you have the population who does not have choices, like those who need a new heart.  If we were to ask for public funds to pay for organs, those who need new hearts and livers should come first.  I've been guilty in the past for just focussing on kidney recipients, but I never meant to ignore any population that needed a new organ of any sort.

I think people with power in our society want to be able to buy organs, because their sense of self does not include accepting charity of any sort, and if they want to preserve their sense of self, by god society should be forced to accommodate them.

Oh, now that's an interesting thought!  Since I've never had power in our society, it is hard for me to imagine anyone thinking along these lines.     But again, I don't think anyone should ever, even if we had a tightly regulated market, be able to buy an organ for themselves.  I guess, however, that those with power and money could find a way to do anything they want.  Do you think that rich people now can buy organs for themselves?  Does anyone know how Steve Jobs got his liver transplant in such a timely manner?  I would have thought him ineligible for transplant due to his history with pancreatic cancer, but maybe his money talked.  Anyone know?

 

Informed consent is another sticky wicket (and yes I am using a sport metaphor without knowing thing one about the sport!) Where does informed consent end? No one can predict what will happen to the individual. When does informed consent become 'needlessly scaring the potential donor'? How much onus do we place on the potential donor to ask the questions that concern them?

I think that the beginnings of an answer to these questions can come from our experience with dialysis or with any treatment (ie chemotherapy) that carries risks and/or distressing side effects.  How much onus do we place on CKD5 patients to ask questions regarding dialysis?  No one can predict what will happen to the patient about to initiate dialysis or chemotherapy or any kind of surgery.

They also have found that donors sustain psychological damage from the process (thanks, Canada!) and since psychological health is not on most surgeon's Great List of Important Things, I think it needs to be put there.

Doctors consistently ignore psychological damage/health.  My nephrologist is very well respected in the area where I live, and he is very knowledgeable.  He is, however, a Human Eeyore.  In the seven years I have been seeing him, he has never addressed the emotional/psychological impact of CKD.  I'm certain this is commonplace.

[MooseMom]

A simplistic view (sorry, I get completely and utterly confused by cariad and MMs posts!) from a living donor:

Ah, I know.  We're both so all-knowing and all-seeing, plus we both can spell.

I was made aware of all the risks.

What exactly were you told about your future renal function due to donation?  Were you given any sort of scientific data or statistics?

In a future world where people are paid for donating body parts, would I be paid more than the altruistic donor who may simply breeze in, sell their kidney and breeze back out again, thinking they've 'saved a life' and spending eternity patting themselves on the back for a job well done, but never actually knowing, or even caring about the recipient (after all, they have their money in the bank; it was a simple transaction)?

Well, this brings up a question in my mind!  If you needed a new kidney or heart or whatever, would it matter to you if your donor cared about you or not?  Would it matter to you that your donor, if it was someone who anonymously sold their kidney to a central bank at a set fee, might spend eternity patting themselves on the back, never knowing who you were?  Is that personal connection important?  It doesn't seem to be that important to recipients of a cadaveric organ, but would that equation change if you knew your donor was living?

And, if the kidney fails to take can the recipient get their money back because the product wasn't fit for purpose?   

If the "product" wasn't fit for purpose, it shouldn't have been allowed to be donated in the first place.  Any and all potential donors should still be put through rigorous testing just as they are now.  Again, in my little mind, when I picture a regulated market, I picture a central bank or transplant center being the purchaser, not an individual recipient, so no, a recipient wouldn't be getting their money back just as the NHS doesn't get their money back should a transplant fail.

Good questions!

[cariad]

I'll have to wait for a time when I'm not feeling so depressed.

All I can offer is a big one of these:

It's true that those in renal failure do have options, but I think it might be unfair to suggest that dialysis is a good option for all people.  Some are able to do do fairly well on dialysis, but others wither quickly, and you don't always know into which catagory a particular patient may fall. 

Yes, but this is true of transplant, too. So, therefore, you have two less-than-ideal choices and not everyone in the population can avail themselves of both choices. But in the public consciousness, you can always go on dialysis, and it's one more choice than many have. What about the renal patients who have to stay off the list for lack of private insurance? Or are kept off because of doctor bias (so-called obese people - still waiting for someone, anyone to show me the evidence).

Since I've never had power in our society, it is hard for me to imagine anyone thinking along these lines.     But again, I don't think anyone should ever, even if we had a tightly regulated market, be able to buy an organ for themselves.  I guess, however, that those with power and money could find a way to do anything they want.  Do you think that rich people now can buy organs for themselves?  Does anyone know how Steve Jobs got his liver transplant in such a timely manner?  I would have thought him ineligible for transplant due to his history with pancreatic cancer, but maybe his money talked.  Anyone know?

I don't think it is known that he had a 'history' of pancreatic cancer. I was just putting two and two together the last time this was discussed on here (like five minutes ago) because I had read an interesting article by a physician who claimed that his form of cancer takes an age to kill someone and is highly treatable. Well, he just had that liver transplant. Nice going, transplant surgeons. That liver could have saved someone who would have lived a good long time. I totally believe they were dazzled by him and fancied him more important than we serfs of the world.

I think you have more power than you realise, or at least than you realise that I was trying to address. You have education, your husband has a high-status job, you have insurance and the ability to get doctors to listen to you. I guess I'll just come out and ask another really blunt question, not wanting to offend anyone, but this is trying to get at the point I am trying to make, and maybe solidify it for my own purposes later (paper): Have you ever had to rely upon someone else for something that you honestly could not do for/give yourself? Transplant can make you feel that way, and I believe this is a societal problem.  We are to be grateful to the transplant doctors for giving us the time of day, but not the teacher who teaches our children how to behave like human beings. Transplant can make you feel like a charity case. Paying for it is supposed to counteract this, but it won't. Those surgeons are paid, we are still expected to dutifully kiss their little rings. They can reject your 'gift' as in your custom, but you cannot reject theirs without hurting yourself. The poor are used to this feeling in my opinion. Therefore, in my opinion, the poor are better equipped emotionally to handle that aspect of transplant, and thus better candidates for the surgery. (how's that for turning the hierarchy on its ear?) Just add it to the pile of crap they've endured.

Someone like Sally Satel, a doctor, a psychiatrist, she fancies herself too important to have to put up with that feeling. That NYT article, I am going to go look for it and link it. I reread it recently, because I was reading about schizophrenia for psych anthro and she was quoted in our text (she was, in fact, called out in the reading, but it was so fast that someone not looking for the name would have missed it). I mentioned her to my prof and he called me over after class and said "Sally Satel is...." and I offered "a real nutter?" and he said "she's really out there.... politically....." I said "Yeah, she's really libertarian" and he said "Well, I think 'libertarian' is being kind...."

In the reading, she had the cheek to say that we should not give the mentally ill disability because they'll only blow it on street drugs. I am not kidding. They actually did a study of this and found that this was total nonsense. So I read her little transplant tale in the NYT and basically it was all about her emotional needs with regards a donor. OK, here is the link. http://www.nytimes.com/2007/12/16/magazine/16kidney-t.html?pagewanted=all Perhaps it's just my dark humour, but I laughed myself silly reading it. In her mind, she is truly the axis around which this humble planet spins. In fact, I cannot believe Ralph flipping Gibson took a photo of her scar. Somehow I think it must have been within her list of demands before she would grace us with her life's tale....

Doctors consistently ignore psychological damage/health.  My nephrologist is very well respected in the area where I live, and he is very knowledgeable.  He is, however, a Human Eeyore.  In the seven years I have been seeing him, he has never addressed the emotional/psychological impact of CKD.  I'm certain this is commonplace.

I think you're absolutely right....

[MooseMom]

I had never really given any thought to the idea that transplant surgeons expect their patients to "dutifully kiss their little rings."  I guess I just assumed that one patient is pretty much indistinguishable from the next.  It never occurred to me that should I ever have a transplant surgeon, s/he'd remember me from one visit to the next.  It's very interesting that any recipient would feel like a charity case.  Do you think most transplant recipients feel this way?