Attitude Toward Renal Patients by Opponent of Paid Organ Donation

[stauffenberg]

Ever wonder what the underlying attitude toward dialysis patients and transplant is among some of the opposition to paid kidney donation?  The most prominent leader of the campaign against paid kidney donation, the founder of the organization 'Organ Watch' which travels around the world to stop this trade, is the anthropologist Nancy Sheper-Hughes.  She writes in "Rotten Trade: Millenial Capitalism, Hman Values and Global Justice in Organ Trafficking," Journal of Human Rights, vol. 2, 197ff that there is no real problem of a scarcity of organs for transplant, since this is just the entirely artificial creation of an unnatural biotechnology unwilling to let the sick die naturally (p. 206).  Advanced medical procedures "have incited new tastes and desires for the ... organs of others" (p. 197) she assumes, as though patients dying of renal failure would never naturally want to live longer if the artificial stimulus of unnatural transplant medicine had not misled them into adopting the bizarre taste for more life. 

She dismisses the desperation of dialysis patients for a transplant as nothing more than "a new form of commodity fetishism" (p. 198).  The availability of transplantation has resulted in "the transformation of a person into a 'life' that must be prolonged or saved at any cost," making "life into the ultimate commodity fetish" (p. 206). Funny, I never thought of my life as a commodity, or my desire to live rather than die as a commodity fetish!

To reduce at least partially the long waiting list for kidney transplants, Sheper-Hughes finds attractive the solution used at Auschwitz to reduce the concentration camp population at the entry gates by sorting out the weak and sending them directly to 'showers.'  She recommends that the very old and the very young simply be denied a place on the transplant waiting lists and be condemned to a premature death on dialysis (p. 221).  To the many dialysis patients who would die because of her desire to stop the trade in paid organ donation, she recommends that they re-learn "the ancient prescriptions for virtue in suffering and grace in dying" (p. 200).

Fortunately for Sheper-Hughes, access to psychiatric care is more readily available than are kidneys for transplant.

[Rerun]

A lot of what she said I've thought to myself.  The whole "cost" of dialysis and transplants are so outrageous.  Am I worth all this money when I'll die at some point due to complications anyway? Is it worth Medicare going broke so that normal old people suffer? The cold hearted reality is that if there wasn't this torturous machine I would be dead.  But, here we are in the 21 century and dialysis is a real part of our lives.  So are transplants and the list.  If we are going to do this transplant thing then lets do it right and make them a marketable commodity, just like surrogate babies.  The donors deserve compsination for their kidneys and their time and trouble.  The people who could afford them would get off the list and the poor would move up.  What's wrong with that?

As far as Sheper-Hughes... I wish her kidneys would fail.

   

[Nan]

Ditto.............Rerun  the secret is............the recipient NEVER finds out who the donor is!

[Rerun]

Hmmm I've never thought of anonymity.  Nice idea.   

[stauffenberg]

It is truly astonishing how much luddite misanthropy there is in the movement against payment for organ transplants.  Another fervid opponent of that proposal is the gushingly romantic theologian, Gilbert Meilaender, whose head is so full of lines from old novels and religious mythologies that he can no longer think clearly.

In his "Gifts of the Body" The New Atlantis, vol. 13 (2006) pp. 25ff, he writes that "progress in curing disease is not an unconditional or sacred commitment.  The survival of society is not threatened when we do not conquer disease, however sad this may be for those who suffer. From one angle, as long as one irreplaceable person dies whose life might have been prolonged through transplantation, there will always be an organ shortage.  From another angle, that is just the truth of the human condition.  If we turn organ procurement into a crusade, we make of death simply a problem to be solved rather than an event to be endured as best we can with whatever resources of mind and spirit are available to us." (p. 28)

So just suck it up, guys if you can't get a transplant, since your premature death because you are stuck on the waiting list is really just something "to be endured as best you can," not something "to be solved."  It is just artificial thinking, holds Meilaender, that creates the erroneous impression that there is a problem of a shortage of organs for transplant when in fact what dialysis patients should do is just die.

[Kitsune]

Stauffenberg,

While I don't agree with most of what Ms. Sheper-Hughes said, I do agree that the very old should not get cadaveric organ transplants, due to the scarcity of organs for transplantation and the high rate of rejection that goes with it for an elderly person.  However, if an elderly individual wants to live by staying on dialysis, more power to them.

Cadaveric organs  are a scarce resource, and whereas an 80 year old might get 5-10 years out of one, a 30 year old can get fifty, not to mention he or she could re-enter the workforce and get insurance which will help cover all the anti-rejection meds he or she will need for the life of the transplant, whereas the old person will remain on Medicare for the rest of his/her life, therefore sucking thousands of dollars out of the healthcare system, and condemning someone who has a better chance at a long life to die.

I am all for letting an elderly person remain on dialysis if he or she or their caretaker chooses to do so, but  giving a young-to-middle-aged kidney to an 80 year old is insanity. Most of the nursing home people at my center are on Permacaths so they don't even feel the needles, and some even say they like the companionship they believe they get there.

And the one other young person (23 and has profound Autism and a myriad of other health problems that prevent him from even being considered) that is there (who, unlike me cannot even get on the waiting list but has no Permacath, they use needles)  likes going because he gets away from his overprotective mother and sister 4 hours twice a week and the staff let him watch Spongebob and draw pictures of Spider-Man which they put on the bulletin board. He cannot live on his own and has no interests except cartoons, and will probably never get a job or even learn how to make macaroni & cheese for himself, let alone take anti-rejection medications on time without being reminded, and even then he may not if he is enjoying something on television. This is why he is not on the list, despite his mother's best efforts.

I am not trying to be unkind here, but does anyone here think that an 80-90 year old person or one who is profoundly autistic really has the strength or mental facilities to care for a transplant?  Will they really be able to go the once-a-month checkups without being reminded? Do they have the health to live through a transplant? Will they take their meds correctly, on time at the proper dosage? Are they healthy otherwise? These are the things doctors look at when they decide if someone will be on "The List" .

The best and most humane and kind thing to do in cases where a person is not suitable medically or otherwise for a transplant is to keep the person alive on dialysis if they or their guardian (if it applies)  choose so, so that they are cared for in the most medically suitable method for their needs and limitations.

[okarol]

If someone who is over 80 years old is willing to accept a kidney from a deceased (or perhaps even a living) donor who is 80 to 90 years old, I say go for it. They do heart surgeries and all kinds of life prolonging procedures on old folks. I don't know how I will feel at that age, but if you could get a few more good years, why wouldn't you strive for that?

[Kitsune]

It's the whole thing of "Who will benefit more?" I'm sorry that it's not a politically correct attitude, but that 80 year old has lived their life and had their experiences.  On the other hand, I at 31 have never even been out of the country, have never been healthy enough to have children and have been out of the state I lived in a grand total of 4 times.

This is not Unicorn Fairyland General Hospital where the doctors, say, "Gee wow that's somebody's Grandma. Granted she's 90 and has Alzheimer's, but she has grandkids., That 30 year old over there doesn't.  Let's give the kidney to Grandma!!!"

And, okarol, I noticed that you said your daughter had a kidney transplant. How about if that kidney had gone to a 80 year old because your daughter's donor shared your attitude? Something tells me you'd share my feelings, and don't try and tell me you'd be happy for them, because you wouldn't. I've been on dialysis for a year and am waiting for a kidney and I'd be hopping mad if some 90 year olld at my center got a kidney and I didn't.

I don't go for all that happy-dappy PC nonsense of "everyone shoud get a kidney." No, everyone should not get a kidney, especially with the scarcity of them, and that is why they do not put anyone older than 65 on the list.

That is stupid to let a young person die so some old person can have "a few more years."  I'd rather see a 90 year old die than an 18 year old, and most other people will agree, like it or not.

[flip]

I think that is a decision best left to transplant centers. Each case should be evaluated on its own merits regardless of age. Most cadaver transplants don't last that long anyway. What's the average life of a transplant? Can a twenty year old expect to live to old age with only one transplant? Probably not, 20-30 years would be great.

As far as cost to Medicare...the 65 year old has paid in all his life and the 20 year old has paid very little. It's age discrimination. I'm 60 years old and in good health other than ESRD. I expect to live to at least 90 (longevity runs in the family) and I don't want someone telling me "you're too old, you have to die"

[Zach]

Cadaveric organs  are a scarce resource, and whereas an 80 year old might get 5-10 years out of one, a 30 year old can get fifty ...

The half-life of a living donor kidney is about 18 years ...

This is not Unicorn Fairyland General Hospital where the doctors, say, "Gee wow that's somebody's Grandma. Granted she's 90 and has Alzheimer's, but she has grandkids., That 30 year old over there doesn't.  Let's give the kidney to Grandma!!!"  

Not too sure that elderly person on hemodialysis in your example would ever be considered for a transplant.

Please read about the new UNOS program to distribute Expanded criteria donor (ECD) kidneys: A kidney donated for transplantation from any brain dead donor over the age of 60 years; or from a donor over the age of 50 years with two of the following: A history of hypertension, a terminal serum creatinine greater than or equal to 1.5 mg/dl, or death resulting from a cerebral vascular accident (stroke).

These are usually for patients 60 and older.

Lots more changes are in the works at UNOS.

[okarol]

And, okarol, I noticed that you said your daughter had a kidney transplant. How about if that kidney had gone to a 80 year old because your daughter's donor shared your attitude? Something tells me you'd share my feelings, and don't try and tell me you'd be happy for them, because you wouldn't. I've been on dialysis for a year and am waiting for a kidney and I'd be hopping mad if some 90 year olld at my center got a kidney and I didn't.

I don't go for all that happy-dappy PC nonsense of "everyone shoud get a kidney." No, everyone should not get a kidney, especially with the scarcity of them, and that is why they do not put anyone older than 65 on the list.

That is stupid to let a young person die so some old person can have "a few more years."  I'd rather see a 90 year old die than an 18 year old, and most other people will agree, like it or not.

I guess you missed the part where I said old people should get the organs from other old people.
Everyday, under the current system, people like you and Jenna die and organs go to 80 year olds. It does not seem right. But someone said to me, would you be willing to toss your grandmother off the list if they were healthy in every other way. I don't really know. But I do agree with "best use."

[Rerun]

I agree with Kitsune.  I get so mad when someone refers to so-n-so on the list.  WTF..... I can't even get on the list and this person with one leg and is comatose most of the time is on the list? 

There should be an age limit.  Dialysis can keep you alive but a transplant should be for those who want to LIVE.  They have young children or can and want to work full-time.  Or have enough MONEY to not work but want to travel the world.

Lets use the old row boat scenario....  two people are in a row boat and it starts sinking.  One has to jump out.  Should it be the 80 year old or the 20 year old.  If it was my grandma I'd toss her ass out.  (Bless her soul)

Survival of the fittest folks!!!     


                                                             

[flip]

Sounds like some of us old farts may be fitter than the younger ones. I do agree though, Rerun....survival of the fittest.

[stauffenberg]

Of course the whole point of the original message is to argue for allowing paid kidney donation so we can wipe out the scarcity of kidneys for transplant almost immediately.  Then we are no longer forced into the cruel logic of the 'survival of the fittest,' which belongs in the jungle, not in human society, and we can instead give everyone a transplant who needs and wants one, just as we give all who need and want ordinary medicines and medical care the access they require, whether they are old andone  unfit or not.

One thing I would add is that contrary to the usual assumption, transplanted kidneys are much less likely to be rejected in older recipients than in younger ones, given the decline in effectiveness of the person's immune system with increasing age.

[kitkatz]

Come one over Rerun and sit with me in my corner.  Not listed, not gonna get listed!

[flip]

I'm in the same boat (or corner) too. Why worry?  I don't like surgeries anyway.

[petey]

I have very mixed feelings on this issue.  First, let me say that my husband Marvin has been on "the list" since March of 1995 (except for a three-year period in the middle -- from 2000-2003 when he had a living donor transplant).  Every time Marvin and I hear of someone we know getting a transplant from the list, I am happy and sad -- happy for the recipient because we know how wonderful a transplant can be (or it was for Marvin), and yet sad because THIS one wasn't Marvin's.  (This is the way I feel -- Marvin doesn't share my outlook on this issue -- see below.)

When we start saying that older people shouldn't be able to receive a transplant from the list (merely because of their age), we get into a situation of saying, "Whose life is more important, possibly going to be longer, going to be better, has more to offer to society ... etc. than another's."  To me, that would be like deciding that one person's life is worth more than another's, and I have a hard time with that.  Let me give you an example:  There's a young lady Marvin and I know who got a transplant just a few years ago; she's 22 years old and had been on dialysis for about six months.  After the transplant, she didn't take care of herself (drinking A LOT of alcohol, not taking her anti-rejection meds as she should have, in general not taking care of her health).  She lost the transplanted kidney just a few months ago -- she had had it for about a year and a half.  I thought, "If that kidney had gone to Marvin instead of her, I think the outcome would have been different."  I KNOW he would have taken care of himself and his new kidney as best he could (though that's not a guarantee that the transplant would last years and years -- we found that out with his first transplant).  She had been on the list for six months as compared to Marvin's 13 1/2 years!  To me, it didn't quite seem "fair."

And, also, where do we think the "line" should be that cuts off a transplant recipient's acceptability on this list?  80?  How about a person who's 79?  How about the one who's 81 and in very good health otherwise?  How are we going to determine which recipients are mentally and physically capable of "taking care" of a transplant?  Just what is going to be the criteria and who is going to set this criteria?

I'm worried because Marvin is now 52 years old.  If he continues to do all he can to take care of himself and stay alive on dialysis, will there come a time when somebody somewhere says, "You're too old now.  This is no longer an option for you"?  That would be devastating for me to hear someone say that to Marvin.

The "list" and the organ distribution is certainly not perfect the way it is.  How do we make it better?  I think the only way to do that is to find a way to increase the number of donated organs; short of that, I'm not sure there's a better way than what we have now.

Please read about the new UNOS program to distribute Expanded criteria donor (ECD) kidneys: A kidney donated for transplantation from any brain dead donor over the age of 60 years; or from a donor over the age of 50 years with two of the following: A history of hypertension, a terminal serum creatinine greater than or equal to 1.5 mg/dl, or death resulting from a cerebral vascular accident (stroke).

These are usually for patients 60 and older.

Lots more changes are in the works at UNOS.

About two years ago, Marvin's transplant hospital asked him if he wanted to be in this "expanded donor pool" because he has such high antibodies (95%+), he's been on dialysis for so long, and he's much "older" than when he first went on the list at age 39.  We researched it, I prayed about it, and Marvin thought seriously about it.  He opted to be added to this list, too.  He said SOME kidney would be better (for him) than none at all.

I struggle with this topic, but Marvin does not.

He says there should be no limitations because of age, mental capability, socio-economic status, race, religion, or anything else for someone who wants to be listed.  When we hear of someone who gets a transplant, I'm happy/sad, but Marvin is ALL happy.  He says, "That's one more person off the list, which should increase my own chances."  When I say, "But it's not FAIR that so-and-so got a transplant and then didn't take care of herself, didn't take her meds regularly, got falling-down drunk every other night, etc...," Marvin says, "There's NOTHING about this disease that's fair.  It's not fair that I have ESRD.  It's not fair that I have had almost 2,000 dialysis treatments.  It's not fair that you have had to go through all that you have.  Life's not fair, but this life is the life we got in the draw.  You just have to do the best you can with what you got."

Marvin says when it's his "time" to get his transplant, it will come and it will be the "one" for him.  He says that he can't spend his life being envious of others who get a transplant, who never have had health problems, who have never had to endure dialysis, etc.  He says there is a reason for why his life is the way it is.  When I ask him just exactly what that reason is, he says, "I don't know.  I'm not supposed to know yet, and I can't worry about it."  He is a better person than I am.

[stauffenberg]

In the days before there were enough dialysis machines to offer even that treatment to all patients with endstage renal disease, the state of Washington established the so-called 'Seattle God Committee,' consisting of 'respected members of the community,' which actually presumed to rate the 'worth' of patients lives to determine who would have access to scarce, life-saving dialysis treatment.  The fact that one of the members of the committee was required by statute to be a 'banker,' better known to families thrown out on the street after foreclosure as a 'vulture,' shows what an arbitrary notion the state had of what constitutes 'respectable' community members.

All the possible ways of distributing kidneys for transplant are of disputable fairness, since you can always choose a different way to weight time spent on dialysis, medical need for an immediate transplant, and medical ability to get the maximum benefit from a transplant.  It would be much better if we could dispense with all these debatable criteria by simply expanding the donor pool by allowing paid donations.

Extended donor criteria kidneys will never make up the current shortfall in organs for donation.  But even using them now replicates the problem faced by many bankrupt systems, which is that they borrow against the future to pay for present needs, but in doing so ony worsen the situation later on.  In the cases of expanded donor criteria kidneys, by transplanting sicker kidneys to patients now, we guarantee that these will fail sooner in the future, so we just postpone our problems with these  patients until later, as well as further stressing the financial resources available to the healthcare system, since transplanting a kidney that will last five years costs just as much as transplanting one that will last fifteen years.