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Author Topic: Dialysis: "They Decide Who Lives, Who Dies"  (Read 29867 times)
Bill Peckham
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« Reply #25 on: July 29, 2011, 12:20:48 PM »

The remarkable Voice Expeditions Nephrology Oral History Project has interviewed a number of doctors from that time remembering their own experience with having too few resources to meet demand. One that has always stuck in my head is Sadler describing a situation where a committee in his program declined to allow home hemo for a woman based on her need for a partner and the fact that her live in partner of 12 years a cop, was not willing to tie the knot, for whatever reason. He's quoted as saying  "I've been standing by her for 12 years, I am not going to let her go now, but I'm not going to get married." And for that she had to die.

This was not just a Seattle experience. For a first person account of those first years in Seattle, check out Jack Cole's oral history. He was hired to be Scribner's lab tech guy about a month before Clyde Shields received his first treatment and he stayed with Scrib for the duration. Jack is able to speak from a real interesting perspective - a lot more nuts and bolts - about those early days. Here's what he says about the committee:

Yeah. Yeah and Scrib would talk every once in awhile about it. Yeah, it was a, it was an imperfect solution obviously and, and it bothered him. It bothered him. It, it, it, the thing about it that bothered him was having to turn people away that, in his view, well, in his view it was unnecessary and he couldnít understand and we couldnít understand why society wouldnít come to grips with the, the problem. And deal with the problem. It was just, it was pushed to the side. And uh, Iím, Iím glad I wasnít on that committee.

I think that Scribner thought if society had to shoulder the burden of choosing, then they wouldn't choose, they'd fund enough to meet demand. I'd say that's what happened. It took 10 years but uniquely dialysis is funded in this country - between Medicaid and Medicare 98 or so % of people who need to use dialysis have funding for their care. Would that have happened if Scribner had made the decision? If Scribner had decided to leave it to chance - luck of some sort of draw - would there be a ESRD program under Medicare?

The idea of it being left up to chance instead, is tempting but aren't we moving away from that in kidney allocation? I'd say that antigen match is basically a random occurrence and these days with antigen match seen as having less of an impact on the Tx outcome ... allocating kidneys by "best match" is equivalent to allocating them by chance. But that system didn't seem fair or at least the results of that system appear to be sub optimal. I think an access to treatment allocation system that relied on chance would seem sub optimal in the same way.

The committee's conceit was that they could do a better job than chance. BTW the Seattle committee didn't have to meet after 1967 because of increased funding and the widespread use of home hemo which was less expensive and required fewer bricks and mortar.

One note. When I found that picture I was in the UW archives, looking in old boxes, looking for the minutes of the committee. I've served on enough committees now to believe that there had to have been minutes taken. Finding those minutes is a treasure hunt I've come back to more than a few times - they're my white whale. I have a lead that I'll try to follow up someday - I think they're out there somewhere.
« Last Edit: July 29, 2011, 12:26:59 PM by Bill Peckham » Logged

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cariad
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« Reply #26 on: July 29, 2011, 12:54:00 PM »

Yeah. Yeah and Scrib would talk every once in awhile about it. Yeah, it was a, it was an imperfect solution obviously and, and it bothered him. It bothered him. It, it, it, the thing about it that bothered him was having to turn people away that, in his view, well, in his view it was unnecessary and he couldnít understand and we couldnít understand why society wouldnít come to grips with the, the problem. And deal with the problem. It was just, it was pushed to the side. And uh, Iím, Iím glad I wasnít on that committee.

I think that Scribner thought if society had to shoulder the burden of choosing, then they wouldn't choose, they'd fund enough to meet demand. I'd say that's what happened. It took 10 years but uniquely dialysis is funded in this country - between Medicaid and Medicare 98 or so % of people who need to use dialysis have funding for their care. Would that have happened if Scribner had made the decision? If Scribner had decided to leave it to chance - luck of some sort of draw - would there be a ESRD program under Medicare?

OK, now we are getting somewhere! For this point makes all the sense in the world to me, but requires that one admit that these people were collateral damage for a cause. I guess if that was a conscious decision on Scribner's part, then would he not have chosen to make the committee proceedings public?(not member identities, that could have been a safety issue) This is the most interesting theory that I've heard yet, Bill. I do recognise Scribner as a the great humanitarian that he apparently was, and his enormous contribution to renal replacement therapy. I used one of those shunts, as I've mentioned, and whether I could have had a transplant without it or not is probably a question that cannot be answered.

I don't think HLA match is quite random enough. If you're a white European and you live in America, you will get a kidney off the list faster than minority members of your blood group (in general) because you are part of a majority, and a majority that generally speaking is more inclined to donate than the various minorities. I think within subsets, the list is by chance, and it is as fair as possible for the most part, though I think we need to take age into account. To me, factors like age don't define a person. It is not like saying 'we reject you because you are not college educated' or 'we reject you because you are female'. All of us go through our chronological ages at the same rate. I am not explaining this well, but I think most people will get what I am trying to say.

I rang up my father this morning, because this was still bouncing about in my head - were the 60s really that backward? So I am asked him if he had heard of the Life or Death Committee before I became ill, and his answer was no. Then I asked him when he graduated law school, and he answered 1969. I told him about the Law Review article, but he had not read it, nor would I have expected him to. I asked him if he thought people in the 1960s would have found this shocking, and he said absolutely, yes, and he used the word 'barbaric' and then said that this was what led to Medicare for all renal patients. I sent him a copy of the Life article since he said he had never read it. I don't know that he will read it, but if he does, I would be interested to see if he is able to put himself back in that time period. He did concede that he felt they were in a terrible position because of how new and expensive this treatment was.

I don't know if you are onto something with Scribner's thought process. I suspect that the same thing might have been accomplished by drawing lots, though. Ask people who are randomly declined to give a final interview, let them in on the process to at least give their death some meaning rather than go to their graves with the knowledge that they were judged unworthy.
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« Reply #27 on: July 29, 2011, 03:39:40 PM »

I don't think the work of the committee created collateral damage unless you are saying there was some path that could have led to a meaningfully different result. I don't think there was such a path.

If Scribner had instead used some sort of random strategy that you would, today, approve of, it could have produced the EXACT same result - unlikely but possible. So it isn't the results that repulse you, rather it is the process that led to the results.

What I'm saying is that by not doing society's dirty work Scribner left society to figure it out and what was learned is that it can't be done. I think you are taking the position that people should have know it couldn't be done and refused to do it but I don't think it is reasonable, in the age of medical miracles and space travel and a limitless future (the 1962 Seattle Worlds Fair - the Century 21 Exposition - is the context that this happening) to expect people to widely recognized the limits of reason and human judgement.
« Last Edit: July 29, 2011, 03:43:14 PM by Bill Peckham » Logged

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« Reply #28 on: July 29, 2011, 08:00:25 PM »

I don't think the work of the committee created collateral damage unless you are saying there was some path that could have led to a meaningfully different result. I don't think there was such a path.
I think I understand what you are saying here - if the end result, people dying and getting Medicare after 10 years - was the same, then it is not collateral damage, just something inevitable.

If Scribner had instead used some sort of random strategy that you would, today, approve of, it could have produced the EXACT same result - unlikely but possible. So it isn't the results that repulse you, rather it is the process that led to the results.
Of course people dying prematurely and in pain is upsetting no matter what the route, but this particular process adds extra insult to the dying, in my opinion. I am just trying to put myself in their position, if I had to die for want of a scarce resource, would I prefer to know that a committee put particular thought toward whether I should be saved, or would I rather hear that it was just down to chance. I think I would prefer the latter, but who knows, maybe they are both so bad that it would have made no difference to me. I wonder if ahamner could comment on if it would have made any difference to him? Obviously, I am glad that Medicare for all in renal failure came to pass. I wonder what it will take for similar healthcare to be opened up to all who could be helped or saved through treatment?

What I'm saying is that by not doing society's dirty work Scribner left society to figure it out and what was learned is that it can't be done. I think you are taking the position that people should have know it couldn't be done and refused to do it but I don't think it is reasonable, in the age of medical miracles and space travel and a limitless future (the 1962 Seattle Worlds Fair - the Century 21 Exposition - is the context that this happening) to expect people to widely recognized the limits of reason and human judgement.

Was Scribner trying to publicize this widely? Because it rather reminds me of Dr. Strangelove's Doomsday machine, where "the whole point is lost if you fail to tell the world". It seems you are saying that he set this up to demonstrate to everyone how horrific it would be to deny treatment to anyone, but he did not come out and say this, he just orchestrated the process and waited for the collective penny to drop. I don't know enough about Scribner to say what lengths he went to to advocate for the dying. Did he testify before Congress? The feel I have always got from the committees were that they were secretive and did not want this process to be under display. It is astonishing to me that the doctors managed to pick 5 laypeople who all consented to this from the start. There is a psychology to groups that I was trying to get at in one of my earlier posts - the fact that they were not discussing this with each other, challenging each other with their doubts and guilt, was another of their most unfortunate decisions. I am sure you know the story (some say legend) of Kitty Genovese? Sometimes it takes that one person to be the first, and if no one takes the risk to be that person, the inaction feeds on itself within that closed system.

I had heard that this all ended in the late 60s with the advent of home dialysis, but then I thought that Father Darrah had said that he was on the committee until 1970. What was the committee doing all of those extra years?
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« Reply #29 on: July 30, 2011, 09:38:14 AM »

I think the committee had in mind that the public interest was measured in dollars - taxes paid, public support not used. In the 1962 to 1966 period dialysis was primarily available to people who could personally afford it and to heads of household. I think this is true across the country but at least in Seattle that outcome was in part due to the money to treat people coming through vocational sources. The rationale for many of the early funders was around work, dialysis was meant to be a way to get people back to work and paying taxes.

RE Scribner  He established an outpatient kidney center, basically inventing outpatient dialysis. While the Scribner shunt is not much used any more his other invention - outpatient dialysis - dominates the provision of dialysis, in the US and across much of the world, for better or worse. That move out of the hospital was a tactic to stretch resources, finding ways to use available resources to treat more people.

In Seattle you can go back through newspaper archives to read about the early years of the kidney center and various deadlines when money would run out and machines would have to be shut down. Very emotional pleas for funding. Individuals were often the focus of fundraising so you can read many articles about bake sales and clam bakes to raise money. And just as today fundraising success was fickle and rarely fair.

The friction in the nephrology community was to my understanding between Seattle and Boston. Seattle took the position that dialysis was a viable treatment and could sustain people indefinitely thus it could be used by a wide range of people. Boston took the view that dialysis was an extraordinary treatment and was at best a bridge to a transplant thus it should be used in limited situations. This dissonance among doctors slowed the wider use of dialysis, but Scribner was the one saying people were needlessly dying.


EDITED TO ADD: I think the committee outlived its use but there was a case that involved the committee through the late '60s. I came across it reading newspaper archives, it gained quite a bit of notoriety in the press and I think in the nascent nephrology community.
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« Reply #30 on: July 30, 2011, 10:27:10 AM »

The modern medical ethicists are still fixated on money in the QALY per year dollar amount. Berwick takes a slightly different tact putting the QALY per year dollar amount in terms of age of beneficiaries to give the most benefit to the young and the least to the elderly who have already lived the majority of their life.
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Peter Laird, MD
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Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #31 on: July 31, 2011, 06:50:03 PM »

With the government going to hell in a hand basket, do not be surprised if these committees come back.  Medicare is going to realize it cannot cope with ALL of the new dialysis patients coming on board as the population ages.
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« Reply #32 on: August 01, 2011, 12:24:53 AM »

Medicare is going to realize it cannot cope with ALL of the new dialysis patients coming on board as the population ages.
I don't think that will happen.

Dialysis has an immensely adverse effect on the remaining years life a patient has. For example, a man of my age (70) can expect a further 4 years, whereas the average man of 70 can expect another 14.

An aging population may increase the number of dialysis patients, but the increasing average age will be self-limiting. The average patient will not live so long as they do now because the average age is greater and there are more oldies to die earlier.

You can't expect the number of transplants to increase either since the supply is limited and, quite properly, only the younger patients will benefit from transplants. Tough on the old & wrinklies, but that's life ó well, what's left of it.
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« Reply #33 on: August 01, 2011, 12:34:39 AM »

I don't think an ageing population is going to be the only thing that increases the dialysis population.  I suspect that  more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure.  Couple that with the fact that getting preventative care is just too expensive for the average American, and health issues that could be treated if caught early are NOT caught early, the end result being more and more people on dialysis.  Can't say what the situation is in other countries, though.

I'd love to know if the incidence of non-diabetic renal disease is increasing.  Like my fsgs; I have absolutely no idea why I have this disease.  No one in my family has it, and I have to wonder if a good portion of idiopathic renal disease has been triggered by environmental factors.  We are so much more apt to be subjected to all sorts of environmental pollutants in our water and in our food.
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« Reply #34 on: August 01, 2011, 08:21:51 AM »

Thanks for the information, Bill. This provides a lot more context, and I can see that Scribner at least was doing the absolute best he could. After reading your posts, I can see that it was an important and wise decision to "refuse to do society's dirty work" as you say. I think the approach should have been more direct, and I still think that the panel should never have rationalized themselves into taking on this task. Really, seeing the thought process is what really sickens me. As a natural born atheist and a female well under the age of 18 at the time of my first dialysis, they have made it crystal clear that my life represents no value to them. Funny, as I am quite sure I have sent more than a couple doctors' children to university through my illness alone.

If it was just a matter of being able to buy one's way out, my family would have been in a position to to do just that, and let's assume that they would have. Also, the promise to not sue the hospital that played a large part in destroying my kidneys would probably have been all the contribution that was needed. I hate the idea of people dying for lack of money - always have and always will. Just as I detest the idea that someone would be chosen for slaughter over their religious beliefs - was the labor leader that blind to the history that he was invoking with that creepy statement? It would appear so.

I don't think an ageing population is going to be the only thing that increases the dialysis population.  I suspect that  more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure. 

This is largely a myth, the rise of all three of those conditions. The criteria to diagnose each of them has been altered, lowering the standards and pathologising millions overnight. Obesity does not cause renal failure! Diseases like type II diabetes, a common symptom of which is weight gain, are the culprits. If a diabetic alters his/her diet to to a low-glycemic regimen, then the result of this is often weight loss, but weight loss is not the cause of their health improving. These are the fictions that send me insane every single time I hear them parroted back. It is one of the most classic 'blame-the-patient' stances that doctors take because it suggests that a large portion of our population could have prevented their own illness. Maybe in the case of diabetes and high blood pressure there is some truth to that for some fraction of people with those conditions, but obesity, the evidence is not there.



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« Reply #35 on: August 01, 2011, 09:47:34 AM »

I don't think an ageing population is going to be the only thing that increases the dialysis population.  I suspect that  more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure. 

This is largely a myth, the rise of all three of those conditions. The criteria to diagnose each of them has been altered, lowering the standards and pathologising millions overnight. Obesity does not cause renal failure! Diseases like type II diabetes, a common symptom of which is weight gain, are the culprits. If a diabetic alters his/her diet to to a low-glycemic regimen, then the result of this is often weight loss, but weight loss is not the cause of their health improving. These are the fictions that send me insane every single time I hear them parroted back. It is one of the most classic 'blame-the-patient' stances that doctors take because it suggests that a large portion of our population could have prevented their own illness. Maybe in the case of diabetes and high blood pressure there is some truth to that for some fraction of people with those conditions, but obesity, the evidence is not there.
[/quote]

Actually Moosemom got it right, obesity, diabetes and HTN are mountain a catastrophic epidemic of kidney disease in the US. The sad fact is that about 50% of patients on dialysis did not need to ever go on dialysis. Americans are less healthy than prior generations. I just saw a reality show on whether the teenagers were as fit as a senior citizen and the answer in is no they are not. Kids today in general get very little exercise compared to prior generations. We spent all of our time outdoors summer and winter.

Obesity is a direct risk of renal disease as several articles have shown:

http://www.sciencedaily.com/releases/2006/05/060513122553.htm

Sadly, it is true that some folks are to blame for lung cancer from smoking, blindness from not taking care of their diabetes, and heart attacks and strokes from poor blood pressure control. Renal disease is one of many "end organ damage" entities from these three factors alone. That is why there is now so much attention to preventive medicine on bringing our increasing numbers of dialysis patients under control.
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Peter Laird, MD
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Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #36 on: August 01, 2011, 12:47:59 PM »

Here's a bit more info on the study cited by Hemodoc.
http://www.ncbi.nlm.nih.gov/pubmed/16641153

And then there is this from 2004.  It's much more technical, but if you can wade through it, it is interesting.  http://jasn.asnjournals.org/content/15/11/2768.full


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« Reply #37 on: August 01, 2011, 02:45:56 PM »

I haven't looked at the link, but one study does not a risk make. I really do not want to go off on this tangent unless someone wants to start a new thread on it. Then I could debate it all day (not really, but you know what I mean). Correlation does not equal causation!

If you want some excellent reading on this issue try Gina Kolata's Rethinking Thin or The Obesity Myth by Paul Campos. Both are interesting, Rethinking Thin comes from the more science-oriented of the two, as she is an NYT science writer. Campos, as he hastens to point out, is an attorney, but one who looked at just how poorly obesity studies have been carried out and interpreted. Startling how slow the field of medicine is to acknowledge that they may be operating under untested assumptions.  I know this particular idea - that obesity is to blame for all manner of horrible ways to die - is near and dear to the hearts of many medical professionals and laypeople alike, so I knew I would not sway anyone, but I don't care. I have researched this off and on ever since I picked up a copy of Marilyn Wan's Fat!So? in San Francisco. It's been one revelation after the next since then.
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« Reply #38 on: August 01, 2011, 07:31:39 PM »

Thanks for the information, Bill. This provides a lot more context, and I can see that Scribner at least was doing the absolute best he could. After reading your posts, I can see that it was an important and wise decision to "refuse to do society's dirty work" as you say. I think the approach should have been more direct, and I still think that the panel should never have rationalized themselves into taking on this task. Really, seeing the thought process is what really sickens me. As a natural born atheist and a female well under the age of 18 at the time of my first dialysis, they have made it crystal clear that my life represents no value to them. Funny, as I am quite sure I have sent more than a couple doctors' children to university through my illness alone.

If it was just a matter of being able to buy one's way out, my family would have been in a position to to do just that, and let's assume that they would have. Also, the promise to not sue the hospital that played a large part in destroying my kidneys would probably have been all the contribution that was needed. I hate the idea of people dying for lack of money - always have and always will. Just as I detest the idea that someone would be chosen for slaughter over their religious beliefs - was the labor leader that blind to the history that he was invoking with that creepy statement? It would appear so.


One other thing to keep in mind are the actual numbers. Throughout 1962 and 1963, 10 people (seven men, 3 women) were on dialysis at the kidney center. Ten. And the experience was, people didn't die. All five of the first guys were still alive three years later (they mostly still dialyzed at the UW through Scribner's research program (that also dialyzed Eady)) so the assumption was you put someone on and then had to keep them on no matter what happened. To my knowledge no one was ever taken off dialysis once they were given a spot but reading the newspaper articles when funding was running out (May 1963 for instance - I have a PDF of various clippings but it is 6+MB, I'll email it to anyone who asks) makes it clear that people thought shutting the center down was a possibility.

So in your calculus of selecting people to live (I think you give too little credit to the distinction of selecting people to die v selecting people to live) you'd also want to select people who could live the longest, people who could make the most use of the opportunity. Robin Eady is still alive. He had a complete career as an important doctor for kids who suffer from a debilitating and rare skin disease. Many Mom's around the world think of Robin as a living angel and have no idea about his CKD history.

Who knows how it is, of all the people in the world who needed a spot, Robin got a spot but I think in retrospect, I have to say the spot went to the right person. In his case money certainly played a role, in that the family were people of means but that private funding, foreshadowing the future, is the fuel that allowed Scribner's program to serve people who didn't have private funding, and to continue his research. Scribner trained a guy to dialyze in India in 1963; the reason they found out about the importance of water quality is because their patient in Sudan had issues every year when the Nile flooded. It was a crazy time. A time when some doctors thought chronic dialysis was impracticable for all but sick Boeing engineers in Seattle and it was a time when people all around the world - those who were ill and doctors who looked after them - beat a path to Scribner's door to learn what they needed to know.
« Last Edit: August 01, 2011, 07:34:47 PM by Bill Peckham » Logged

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        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #39 on: August 02, 2011, 05:04:27 PM »

So in your calculus of selecting people to live (I think you give too little credit to the distinction of selecting people to die v selecting people to live) you'd also want to select people who could live the longest, people who could make the most use of the opportunity. Robin Eady is still alive. He had a complete career as an important doctor for kids who suffer from a debilitating and rare skin disease. Many Mom's around the world think of Robin as a living angel and have no idea about his CKD history.

I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.

Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.)  I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)

I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over.  :thx;
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« Reply #40 on: August 02, 2011, 05:36:04 PM »


I would love to see those articles. This is a fascinating time in history.


I always forget about Google Docs ... here is a link

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B_NJgQASZkKkNjBiMjdjZjEtM2JhOC00OGE2LThjM2MtNGVlOGM5MmUyMWEz&hl=en_US


EDITED TO ADD It probably makes the mot sense to start at the end of the document and read backwards to page 1. Page 10 and 6 go together, I'd read that article first - it features the photos of the 10 dialyzors, 2 women and 8 men (I misremembered 3 and 7) who were the kidney center's only patients in May 1963.
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« Reply #41 on: August 02, 2011, 07:26:13 PM »


I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.

Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.)  I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)

I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over.  :thx;


The default in my mind is what would happen with no action. If you need a person to go into an nuclear reactor to fix some problem and there is very little chance of surviving (the Spock scenario) and you have a group of volunteers but you only need one then you're choosing who is going to die. Without any action all the volunteers would live (unless they couldn't get away from the nuclear device) so the action is choosing who will have a different fate, who will die.

The Seattle admission committee faced a group of people who all were going to die. In the absence of action the result was 100% mortality so in this case the choosing who will have a different fate meant picking who would live.

>>>--<<<

Children weren't considered because they thought the treatment was too arduous for a anyone but an adult. And reading the accounts I think they were probably right.

I don't think the admission committee faced a situation analogous to the Titanic: Too many people, too few places in the raft; woman and children first.

I'd say the admission committee's choice was more like picking who, from among the qualified volunteers, was going to go out and slay the dragon. At this time people were not sure that dialysis was a good idea and these brave dialyzors went forward to tell us what it was like, was it worth it? - it was their experience that gave people the confidence to make routine dialysis a reality.

>>>--<<<

These committees operated throughout the country, in some areas right into the '70s. The Seattle committee is the only one I hear about but I am fascinated by the situation and reading about what actually happened. Someone (or ones) needs to collect the memories of people who interacted with other committees - anywhere there was dialysis in 1964 to 1968 must have had a committee. I'm really hoping to find the minutes of the Seattle committee but someone else needs to track down the history of other selection committees.

>>>--<<<

I'm not sure what my point was about Robin other than just how amazing and random it all was/is ... his Mom read the Life article in a beauty salon in Paris. A few months later Scribner carried Robin off the plane after he arrived in Seattle too uremic to walk.
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« Reply #42 on: August 02, 2011, 10:03:35 PM »


I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.

Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.)  I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)

I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over.  :thx;


The default in my mind is what would happen with no action. If you need a person to go into an nuclear reactor to fix some problem and there is very little chance of surviving (the Spock scenario) and you have a group of volunteers but you only need one then you're choosing who is going to die. Without any action all the volunteers would live (unless they couldn't get away from the nuclear device) so the action is choosing who will have a different fate, who will die.

The Seattle admission committee faced a group of people who all were going to die. In the absence of action the result was 100% mortality so in this case the choosing who will have a different fate meant picking who would live.

>>>--<<<

Children weren't considered because they thought the treatment was too arduous for a anyone but an adult. And reading the accounts I think they were probably right.

I don't think the admission committee faced a situation analogous to the Titanic: Too many people, too few places in the raft; woman and children first.

I'd say the admission committee's choice was more like picking who, from among the qualified volunteers, was going to go out and slay the dragon. At this time people were not sure that dialysis was a good idea and these brave dialyzors went forward to tell us what it was like, was it worth it? - it was their experience that gave people the confidence to make routine dialysis a reality.

>>>--<<<

These committees operated throughout the country, in some areas right into the '70s. The Seattle committee is the only one I hear about but I am fascinated by the situation and reading about what actually happened. Someone (or ones) needs to collect the memories of people who interacted with other committees - anywhere there was dialysis in 1964 to 1968 must have had a committee. I'm really hoping to find the minutes of the Seattle committee but someone else needs to track down the history of other selection committees.

>>>--<<<

I'm not sure what my point was about Robin other than just how amazing and random it all was/is ... his Mom read the Life article in a beauty salon in Paris. A few months later Scribner carried Robin off the plane after he arrived in Seattle too uremic to walk.

Great explanation Bill, you are exactly right, they chose those that would live. I had never considered the best survival and contribution to society to use as an advertisement in a sense of the power of dialysis. When you look at many of the people from this committee who are still alive like Robin and Nancy Spaeth for instance, they truly have lived as a testimony of the power of dialysis. (Hello Nancy if you are out there) Scribner was right and dialysis is still looked upon askance by the medical community as well as by CMS and others. Yet these brave souls that went through many painful procedures which in reality were open experimentation of this new modality and a surprising number are still alive today. Living life well I am sure was one of the goals of the committee. Sadly, they couldn't treat them all like today, but these dialysis pioneers did live well enough to convince congress to open the doors to all in 1973.

Great point Bill, hadn't thought if it in those terms.
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« Reply #43 on: August 03, 2011, 10:30:17 AM »

I had never considered the best survival and contribution to society to use as an advertisement in a sense of the power of dialysis.

But in highlighting this, it makes it sound like we should only treat the people who are then going to pay us back in some way. This goes right back to ranking people according to their social value. The end does not justify the means, no, not even in the case of Robin Eady. I also do not want dialysis, or rather money spent on dialysis, to be seen as a waste because a person only lasts a few years. Only the individuals can really tell us whether dialysis is worth it to them, and it is not for us to tell them whether they are worth dialysis.

I can see why they did not try this on children initially. Today, that is an ethical quagmire and as a 'vulnerable class' it takes an intense vetting process to even pass an IRB. However, once they saw how reportedly 'painless' it was, I am not sure why they did not go forward. When did the first child receive dialysis (approximately)? Late 60s? I can tell you in 1976, those kids were not developing normally, but they were alive. There was the 3-year-old who looked like a 6-month-old infant, and there was the little Texan who was 3 years older than I, and I was significantly taller than he. 'Livinglife well' is not for a committee to define, and besides, we know that dialysis came down essentially to money even then. They wanted people who would work and pay the world back. This is a miserable approach to the selection process.

Brave souls? Their alternative was death. They wanted to live and this was their only chance, so I don't see that as bravery anymore than I see myself as brave for undergoing a modern clinical trial. I think the real brave souls are the ones who went through the committee, put themselves forward to be judged and then heard that they did not meet society's definition of worthwhile.

I get your point about picking people to live, Bill, I just don't see it as an important distinction. They all wanted to live, or why would they have put themselves through that ugly process? Again, we will never know what remarkable people we've missed out on. No one would have ever guessed that I would become such a long lasting transplant recipient, and doctors have a tendency to rewrite my history to fit the outcome. It is not in my interest to correct them, so I don't. I had a GP with whom I could be honest, and I really treasured those times I spent with him, talking about the roles of luck and chance in medical outcomes.
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« Reply #44 on: August 03, 2011, 04:11:49 PM »

Once again, Bill has placed the context of the dialysis debate in the 1960's, many opposed this new, expensive technology so the aspect of selecting those that would represent the new technology well is evident in all of the lobbying done before congress approved the expansion of Medicare to include dialysis patients in 1973. If Scribner had produced the very disabled group of patients that we have today, no one would have ever approved the 1973 dialysis provision.  As it is, as soon as it was approved, the attacks against it began in earnest with several congressional hearings immediately after the 1973 approval.

While we look back from our current perspective where social worth and other such factors used by the committee are easy to criticize, I would be interested in how people would have chosen the few that qualified if they sat on the committee themselves. How would you approach this resource allocation. I suspect that any system proposed will suffer from disparities as well.

I would note as well that Scribner often went outside of the committee to rescue people that the committee did not pick up. It was not the only actor in this drama.

We all agree that the situation was not one any of us would ever want to be part of, but the ethical obligations that the new technology brought to society is one that we are still struggling with today.

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« Reply #45 on: August 03, 2011, 05:13:52 PM »

A common problem when studying history is the tendency to project our own knowledge, culture and morals upon the group and/or time period that is being studied. It takes self-discipline and introspection to see history from its OWN perspective--one in which the people of that day had to live without the benefit of knowing the future as we do (their future that is). It's easy to criticize after one knows the final outcome, but people have to make decisions in the present.

 
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« Reply #46 on: August 03, 2011, 07:46:02 PM »

While we look back from our current perspective where social worth and other such factors used by the committee are easy to criticize, I would be interested in how people would have chosen the few that qualified if they sat on the committee themselves. How would you approach this resource allocation.

I probably wrote this about 5 times in the above discussion, but again, screen based on strictly medical criteria, then draw lots.

My take on this mirrors Sanders and Dukeminier, who were writing in the midst of that era, almost exactly.
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« Reply #47 on: August 03, 2011, 09:11:23 PM »

This letter is from  Scribner to the periodical Seminars in Dialysis in, I think, December 2000. I've been looking for the article that Scribner is responding to but have come up empty - I think it was Rutecki GW and Kilner JF. ďDialysis as a resource allocation paradigm: Confronting tragic choices once again?Ē Seminars in Dialysis 1999 but haven't been able to get a look yet so I held off posting Scribner's correspondence.


But Scribner does clarify a few things - he seems to be agreeing with cariad :-)  As Peter says it's a point worth remembering that Scribner was running his own research program in parallel - it predated the establishment of the kidney center - and he did not have a committee telling him who to dialyze and who to refer to the kidney center.
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« Reply #48 on: August 03, 2011, 09:50:27 PM »

And I have to say I think the early dialyzors were brave. There is natural death, the known in 1962 vs. the unknown, dying after letting medical researchers have their way with you for a couple of months.


Early on Seattle's success using the therapy long term was unique in the world, many programs had trouble sustaining people with dialysis. I've heard people who were there say that it was because Seattle didn't have a transplant program until the '70s - the: working without a net concentrates the mind theory. I'd say it probably had more to do with the size of the Seattle program - just as today, number of procedures preformed is a telling metric in medicine.


I also know that Seattle, to this day, has remarkably solute free drinking water. So back then, before people understood the importance of water/dialysate quality, Seattle's natural municipal water supported good clinical outcomes.
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« Reply #49 on: August 06, 2011, 04:32:34 PM »

But Scribner does clarify a few things - he seems to be agreeing with cariad :-)

Well, that was quite literally the last thing I expected to read in this discussion. :o :)

That was a great letter, and it certainly does clarify a few things. However, I would point out, as a participant in quite a complex and groundbreaking clinical trial myself, long term survival probably correlates fairly well with how much attention these early patients received toward their care. I came through my second transplant (even though it was a positively grueling process) in large part, I believe, because the surgeon concentrates the bulk of his attentions and energies toward these trial patients. We all have his mobile number, personal email, any little problem I have, he will be on it any hour of any day. I went down to Chicago in the early days after the transplant because I called them with a bit of nausea, and they had the parade of experts come see me over the THREE DAYS!!! that I was in hospital. As was pointed out, if something goes wrong with these early trials, the whole program may be shut down, and chimerism with induced tolerance is currently the closest thing we have to growing a new kidney for someone.

There is no way that my surgeon nor any other could possibly translate that level of care to a large population of patients. So, that is part of the problem why I have enormous trouble with the brave descriptor. People pay a fortune to get the level of care I've received for free. I suspect much of Scribner's success came down to being able to give his best to every single patient.
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