NBC Commentator Dr. Arthur Caplan Calls Dialysis Cruel and Lousy Care

[Hemodoc]

NBC Commentator Dr. Arthur Caplan Calls Dialysis Cruel and Lousy Care
By Peter Laird, MD

NBC news followed it's recent series on dialysis with a commentary online by Arthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania where he called he characterized dialysis as lousy care and cruel:

Dialysis payment program is costly in too many ways

The End-Stage Renal Dialysis program was an act of noble compassion. But ripping off the American people by allowing too many people to receive lousy or unnecessary care is not compassionate at all. It is cruel.

Once again, in the short space of a few days, NBC news has gone down the path of what I consider to be biased reports that casts a shadow over all dialysis patients who benefit from the 1972 ESRD Medicare program. While there are many patients who develop renal failure as a part of a terminal illness, Dr. Caplan should be well aware that the mortality for such patients is greater than 50-60% during that hospitalization alone which persists for those that survive and are discharged especially to nursing homes after such an acute illness.  Proper informed consent with patients and family members keeps many patients who truly will not benefit from acute renal dialysis in this situation from becoming chronic patients.

If we return to the true history of the Medicare ESRD program, the fact that government officials and industry leaders are responsible for the uniquely America poor outcomes.  Data supplied by Richard Rettig,(page 3) a Rand Corporation scholar, shows that in 1972, in-center dialysis costs were between $27,600 - $30,500 while at the same time home dialysis costs were only $14,900 for the first year of therapy and only $7000 for each year there after.  Similar cost differentials  by magnitude of differences still prevail today between in-center dialysis and home based dialysis modalities, yet the outcomes are as much as 60% better with the home programs.

Nevertheless, in 1978 congressional hearings, led by what in my opinion was false or at the very least incorrect testimony by Dr. Edmund G. Lowrie, a high ranking official at that time in the National Medical Care Inc., the large for profit dialysis corporation, congress paradoxically adopted in-center, ultra-short dialysis as the standard treatment of choice. Shortly thereafter, the NCDS led once again by Dr. Lowrie cemented the standard of care for dialysis in America in-center as ultra-short, fast paced, "efficient" hemodialysis that is now responsible for the 2.5 times higher mortality than with a similar elderly population with many diabetic patients in Japan.

If NBC news wishes to continue what are in my opinion biased reports, I am not in a position to do any more than report these facts.  My largest concern is that any future actions by congress and CMS would take a clearer picture of the dialysis industry than NBC has certainly demonstrated in the last few day on any future considerations for the Medicare ESRD program. If cuts are to be made in the program, let it be due to improvements of care and economies of scale taking advantage of the home dialysis option before any politician or physician fails to prescribe care to elderly and infirm patients who may benefit as much as younger and more fit patients when dialysis is done in a compassionate and caring manner, longer, slower and gentler.

I invite NBC news to interview patients such as Bill Peckham and and Dan Larabee and review their videos on the Rogue River last summer setting up portable dialysis units all the way down this wilderness river that is a challenge to young and healthy people let alone, a "dialysis" patient. 

(go to HemoDoc to see the video embedded)

It is time to tell the truth about dialysis as the noble experiment it truly is as the first real gift of life to thousands of uremic patients instead of what is, in my opinion, continued media and political lies about how dialysis truly impacts the lives of dialysis patients.  Perhaps instead of perpetuating the myths of dialysis, NBC and Dr. Arthur Caplan would add more to the commentary by exploring the corruption of congressional actions by dialysis industry insiders that reaped the huge profits that make the American dialysis experience the most expensive in the world with the worlds worst outcomes.

http://www.hemodoc.com/2011/01/nbc-commentator-dr-arthur-caplan-calls-dialysis-cruel-and-lousy-care.html

[Bruno]

Good work, Peter. But isn't the problem the fact that the 3x 5 hour weekly session seems to have developed into the preferred outcome in America with a bureaucracy and professional stakeholders as vocal supporters?
In Australia we are currently running a study who aim is to medically prove that 24 hours weekly is better than 15. The further objective is to change of current dual path system.
I'm not too sure our politicians  will listen to us but you never know, you've got to keep trying.

[Hemodoc]

Good work, Peter. But isn't the problem the fact that the 3x 5 hour weekly session seems to have developed into the preferred outcome in America with a bureaucracy and professional stakeholders as vocal supporters?
In Australia we are currently running a study who aim is to medically prove that 24 hours weekly is better than 15. The further objective is to change of current dual path system.
I'm not too sure our politicians  will listen to us but you never know, you've got to keep trying.

Thanks Bruno, but it is actually worse than 3X5 hours, most are getting less than 4 and some less than 3 hour sessions.  Please let me know what the results are of the study you cited when it is completed.  I believe we already know the answer to that question.

God bless,

Peter

[plugger]

I do hope this is going to be a kinder, gentler environment than what I saw in 2000.  I remember telling the charge nurse and my daughter's doctor I was going to push for home dialysis for my kid: the charge nurse looked at me like I was from mars and the doctor told me about THE ONE home dialysis patient he knew who almost bled to death (understand even then the bells and whistles on machines were good enough where that sort of thing didn't happen so much anymore).

Speaking of 2000, let's not forget some of the people who just may have helped make this latest push possible (2000 Senate Hearings):

Dr. Kenneth Bays
http://www.dialysisethics2.org/index.php/Information/dr-kenneth-bays-us-senate-testimony.html

Brent Smith
http://www.dialysisethics2.org/index.php/Information/brent-smiths-us-senate-testimony.html

Frank Brown
http://www.dialysisethics2.org/index.php/Information/frank-browns-story.html

Arlene Mullin
http://www.dialysisethics2.org/index.php/Information/arlenes-us-senate-testimony.html

I thought about closing the doors at DialysisEthics - heck, it even looks Renal Support Network is doing individual advocacy now (one of our big claims to fame).  But then I thought we have a track record of standing up and taking unpopular stances, and telling the truth - and working with patients you won't see floating down the Rogue river:

Larry Hall
http://www.dialysisethics2.org/index.php/Testimonials/larry-halls-problems-with-davita-and-duke-university.html

Abby
http://www.dialysisethics2.org/index.php/Testimonials/abbys-problems-in-texas.html

So I guess with human nature being what it is we will be sticking around.

[MooseMom]

http://today.msnbc.msn.com/id/40842821/ns/health-health_care/

Here's the link to the entire editorial.  Hemodoc, I have to disagree with you a bit on this one.  While I agree that anyone with the power to affect funding should certainly understand that optimal dialysis is a better and more efficient treatment than the current standard, I do think that there are too many terminally ill patients who do not really benefit from such a burdensome treatment as dialysis.  You can't look at the dialysis population as monolithic in our requirements.  It's like any other rigorous treatment protocol.  Elizabeth Edwards was told that further chemo would do her no good, so why subject her to it?  So that the docs and drug companies could make more money?  That's cruel, and if my mother had been terminally ill from other malady which resulted in renal failure and they wanted to stick her on dialysis to keep her alive, my first thought would have been, "Hmmm...who wants a new BMW from the profits made off my mother's dialysis treatments?"

Dr. Kaplan's piece seemed to focus in on the fact that the US has so many terminally ill patients on dialysis and is right to ask why.  He is right to suspect that dialysis providers gain financially from this practice.  I am not sure he was perpetuating any myth at all.  It is true that his piece said nothing about  what good dialysis looks like, but I don't think that was the intention of his editorial in the first place.  There are many problems with dialysis as practiced in this country, and Dr. Kaplan just looked at one of those problems.  Perhaps we could ask him to write a separate piece about "the other side" of dialysis.

[Rerun]

http://today.msnbc.msn.com/id/40842821/ns/health-health_care/

Here's the link to the entire editorial.  Hemodoc, I have to disagree with you a bit on this one.  While I agree that anyone with the power to affect funding should certainly understand that optimal dialysis is a better and more efficient treatment than the current standard, I do think that there are too many terminally ill patients who do not really benefit from such a burdensome treatment as dialysis.  You can't look at the dialysis population as monolithic in our requirements.  It's like any other rigorous treatment protocol.  Elizabeth Edwards was told that further chemo would do her no good, so why subject her to it?  So that the docs and drug companies could make more money?  That's cruel, and if my mother had been terminally ill from other malady which resulted in renal failure and they wanted to stick her on dialysis to keep her alive, my first thought would have been, "Hmmm...who wants a new BMW from the profits made off my mother's dialysis treatments?"

Dr. Kaplan's piece seemed to focus in on the fact that the US has so many terminally ill patients on dialysis and is right to ask why.  He is right to suspect that dialysis providers gain financially from this practice.  I am not sure he was perpetuating any myth at all.  It is true that his piece said nothing about  what good dialysis looks like, but I don't think that was the intention of his editorial in the first place.  There are many problems with dialysis as practiced in this country, and Dr. Kaplan just looked at one of those problems.  Perhaps we could ask him to write a separate piece about "the other side" of dialysis.

What she said.... plus there are older folks that just can't sit in those chairs for more than 4 hours.  And that should be their choice.  If we made it an 8 hour treatment many people would opt out on there own.  Problem solved I guess??

[Hemodoc]

http://today.msnbc.msn.com/id/40842821/ns/health-health_care/

Here's the link to the entire editorial.  Hemodoc, I have to disagree with you a bit on this one.  While I agree that anyone with the power to affect funding should certainly understand that optimal dialysis is a better and more efficient treatment than the current standard, I do think that there are too many terminally ill patients who do not really benefit from such a burdensome treatment as dialysis.  You can't look at the dialysis population as monolithic in our requirements.  It's like any other rigorous treatment protocol.  Elizabeth Edwards was told that further chemo would do her no good, so why subject her to it?  So that the docs and drug companies could make more money?  That's cruel, and if my mother had been terminally ill from other malady which resulted in renal failure and they wanted to stick her on dialysis to keep her alive, my first thought would have been, "Hmmm...who wants a new BMW from the profits made off my mother's dialysis treatments?"

Dr. Kaplan's piece seemed to focus in on the fact that the US has so many terminally ill patients on dialysis and is right to ask why.  He is right to suspect that dialysis providers gain financially from this practice.  I am not sure he was perpetuating any myth at all.  It is true that his piece said nothing about  what good dialysis looks like, but I don't think that was the intention of his editorial in the first place.  There are many problems with dialysis as practiced in this country, and Dr. Kaplan just looked at one of those problems.  Perhaps we could ask him to write a separate piece about "the other side" of dialysis.

What she said.... plus there are older folks that just can't sit in those chairs for more than 4 hours.  And that should be their choice.  If we made it an 8 hour treatment many people would opt out on there own.  Problem solved I guess??

Dear MooseMom and Rerun, the commentary is first of all not balanced, nor is it accurate.  First of all, the cost for dialysis in 1972 was for the majority of patients $7000 a year since almost all patients dialysis overnight thrice weekly and off those, most worked.  That is his first innaccuracy.  Secondly, reading his commentary with no knowledge of either the dialysis population or of the number of people in hospitials who survive acute renal failure accompanying other illnesses aludes to a very false impression of dialysis.  This is not a patient population that is flooding our dialysis units.  I only saw two patients in my entire time incenter that would be in that category and both of these patients died with in a few months.  Everyone else in our unit were walking and talking patients.

As far as the balance of his commentary, the entire article is slanted to create a false impression of how debilitated dialysis patients are and to create outrage over Americans being "ripped off."  Example:

Last, it is hard to die in an American hospital without being put on dialysis. Because kidney failure is such a frequent complication of terminal illness, the population of people needing dialysis is far larger than Shep Glazer or the lawmakers who authorized the benefit ever imagined. Because there is guaranteed money to be made putting the ill on dialysis, that's often exactly what happens.

The population is not far larger because of some terminally ill patients placed on dialysis at all, they make up only a small percentage of pateints.  Once again, that was NEVER a problem that I witnessed in 15 years of working with critically ill patients.  First, they didn't survive the hospitalization the majority of the time, most that did survive didn't wish to continue dialysis  and lastly, once discharged from the hospital they were frequently readmitted and didn't survive or didn't survive long in the nursing home setting or in the dialysis centers.  It is a very biased article from a transplant expert.  He is simply wrong on his facts and even worse on the overall impression his article creates on the American dialysis system.  Yes, there are indeed abuses of the system, but lets look at the entire system on balance, even the incenter patients for the most part are not at all the portrait he is trying to paint.  Many of the patients in this category seek hospice care, not dialysis care.

This commentary taken together with the other NBC videos is a highly biased, unbalanced and innacurate report giving a false impression of American tax dollars wasted on dialysis.

[MooseMom]

Oh, OK.  I see your point.  I can see where someone who is not au fait with dialysis/renal disease might read this commentary and come to the conclusion that larger numbers of terminally ill patients are put on dialysis than is actually the case.  Maybe this guy sees more terminally ill patients put on dialysis than you have seen in your experience.  What this debates seems to be about is numbers...how many people are put on dialysis even though they are already terminally ill?  He says there are a lot, you say there are not so very many.  Why do you think he would purposely distort the figures?  Do you think he has some sort of agenda that has to do with shifting more funding away from dialysis and toward transplantation?  I don't see anywhere that he is a "transplant expert".

Anytime anyone uses the phrase "ripped off", people get outraged.  That particular word choice was not helpful.

Again, if you are going to focus on just one part of the dialysis population as Dr Kaplan did, I guess you can't expect balance.  I will write to him.

[Hemodoc]

Oh, OK.  I see your point.  I can see where someone who is not au fait with dialysis/renal disease might read this commentary and come to the conclusion that larger numbers of terminally ill patients are put on dialysis than is actually the case.  Maybe this guy sees more terminally ill patients put on dialysis than you have seen in your experience.  What this debates seems to be about is numbers...how many people are put on dialysis even though they are already terminally ill?  He says there are a lot, you say there are not so very many.  Why do you think he would purposely distort the figures?  Do you think he has some sort of agenda that has to do with shifting more funding away from dialysis and toward transplantation?  I don't see anywhere that he is a "transplant expert".

Anytime anyone uses the phrase "ripped off", people get outraged.  That particular word choice was not helpful.

Again, if you are going to focus on just one part of the dialysis population as Dr Kaplan did, I guess you can't expect balance.  I will write to him.

He is a bioethicist, I doubt he sees any patients at all. His lead interest is transplantation research ethics. You can follow my link on this to his home page where I copied the information.

DESCRIPTION OF BIOETHICS EXPERTISE

Arthur Caplan, Ph.D - RESEARCH INTEREST:
Transplantation research ethics, genetics, reproductive technologies, health policy, and general bioethics

ABOUT:
Currently, the Emmanuel and Robert Hart Director of the Center for Bioethics and the Sydney D Caplan Professor of Bioethics at the University of Pennsylvania in Philadelphia.

[MooseMom]

Yeah, but if you read the rest of his bio, he has had his fingers in many many pies.  I read his bio before I posted my last post and saw that he has had interests as diverse as iron disorders and gene therapy.  I don't know if it's fair to say that he is a transplant expert; if he is a transplant ethisist, he might deplore the whole concept as far as I know.

Anyway, I wrote to him and told him that I feared his opinion piece might convince an uneducated public that too many people go on dialysis and funding should therefore be curbed.  I told him that "abuse" and 'ripped off" were incendiary phrases that usually result in people calling for less money to be spent.  I also suggested that if he really wanted to expand his bioethical horizons, perhaps he could look into why so many Americans are denied better dialysis in the first place.  That's a bioethical crisis in my book.

[Hemodoc]

Yeah, but if you read the rest of his bio, he has had his fingers in many many pies.  I read his bio before I posted my last post and saw that he has had interests as diverse as iron disorders and gene therapy.  I don't know if it's fair to say that he is a transplant expert; if he is a transplant ethisist, he might deplore the whole concept as far as I know.

Anyway, I wrote to him and told him that I feared his opinion piece might convince an uneducated public that too many people go on dialysis and funding should therefore be curbed.  I told him that "abuse" and 'ripped off" were incendiary phrases that usually result in people calling for less money to be spent.  I also suggested that if he really wanted to expand his bioethical horizons, perhaps he could look into why so many Americans are denied better dialysis in the first place.  That's a bioethical crisis in my book.

Great Point MooseMom.  That would make a great topic for a post.

[MooseMom]

I invite you to start a new topic, then!  You do the honors.

[RightSide]

What she said.... plus there are older folks that just can't sit in those chairs for more than 4 hours.  And that should be their choice.  If we made it an 8 hour treatment many people would opt out on there own.  Problem solved I guess??

One of the points that was made on the Peckham and Uremic Frost (yes what it's called) blogs, is that in America, a few short sessions per week is more prone to rapid BP drops during the session ("crashing")--and that here in America, the neph often copes with that by ordering sodium modeling.  Sodium modeling has its problems--it can cause extreme thirst leading to more fluid intake between sessions.  I experienced the joys of sodium profiles just a couple times--and then I insisted to my neph that it be stopped.

I would like to see a patient who crashes frequently (and we have plenty at my center) offered a choice between the usual short sessions with sodium modeling, or longer or more frequent sessions without sodium modeling.

[MooseMom]

OMG, sodium modeling?  Sodium modeling?  Just think about that.  You have a patient on short session thrice weekly dialysis, so you need that patient to restrict fluid intake, but you give them SODIUM to get them through a session without blacking out, causing them to experience extreme thirst, yet you still enpect them to restrict fluid intake?  Really?  What part of that is not barbaric?

Yes, it would be nice if a patient could choose not to have this sort of treatment.  And that's the sort of thing I'm going to be writing my congressman about on the 5th once he officially takes office and I can find contact information for him.

[Zach]

Yes, sodium modeling can lead to great thirst when the patient returns home.

However when done correctly, sodium modeling can prevent hypotension during dialysis without causing any additional thirst.  Unfortunately, it seems that some providers and nephrologists just don't take the time to get it right.

 

[Rerun]

If you have loads of sodium in you system (too many chips and beer) then it is hard to get out so they put you on a sodium profile to coax it out if you will.  They usually shut it off a half hour before you end your session.  It is just a way of getting more fluid and salt out.....to stabilize you in a way.  Maybe Hemodoc can explain it better.  They tried it on me but I didn't like it either.

More on Sodium Modeling: http://findarticles.com/p/articles/mi_m0ICF/is_5_33/ai_n17215419/

[MooseMom]

Until Medicare, dialysis companies, and patients are ready to adopt slower and longer dialysis treatments, we will continually wrestle with the problems of how much sodium and when during the treatment and how short can a dialysis treatment be and still be adequate.

Thanks for that link, Rerun.  The above quote from that article from the Nephrology Nursing Journal says it all.

[Bill Peckham]

What she said.... plus there are older folks that just can't sit in those chairs for more than 4 hours.  And that should be their choice.  If we made it an 8 hour treatment many people would opt out on there own.  Problem solved I guess??

One of the points that was made on the Peckham and Uremic Frost (yes what it's called) blogs, is that in America, a few short sessions per week is more prone to rapid BP drops during the session ("crashing")--and that here in America, the neph often copes with that by ordering sodium modeling.  Sodium modeling has its problems--it can cause extreme thirst leading to more fluid intake between sessions.  I experienced the joys of sodium profiles just a couple times--and then I insisted to my neph that it be stopped.

I would like to see a patient who crashes frequently (and we have plenty at my center) offered a choice between the usual short sessions with sodium modeling, or longer or more frequent sessions without sodium modeling.

 


Exactly. Instead of urea we should use the other easy to measure solute, water. Bend the treatment to the patient rather then expecting the patient to bend to treatment.

[MooseMom]

Bend the treatment to the patient and not the other way around?  What a novel idea...

[Hemodoc]

If you have loads of sodium in you system (too many chips and beer) then it is hard to get out so they put you on a sodium profile to coax it out if you will.  They usually shut it off a half hour before you end your session.  It is just a way of getting more fluid and salt out.....to stabilize you in a way.  Maybe Hemodoc can explain it better.  They tried it on me but I didn't like it either.

More on Sodium Modeling: http://findarticles.com/p/articles/mi_m0ICF/is_5_33/ai_n17215419/

There are several versions of sodium modeling but basically, for people predisposed to intradialytic hypotension, low blood pressure during dialysis, they often will add salt to the dialysate at the beginning of dialysis to draw the fluids from the legs stored as edema.  The problem is they almost never get all of the salt load out, so the patient is fiercely thirsty and then goes home and drinks excess fluids and returns two or three days later several kilos above the dry weight and they begin the cycle all over again.

Simply adding time and slowing the ultrafiltration rate or adding more frequency and the problems disappears in most patients.  just one more dialysis practice unique to America really based on getting patients in and out of the dialysis chair to open it for the next widget.

[MooseMom]

I AM NOT A WIDGET!

Plugger, support and advocacy for renal patients need not be territorial.  We need all of the voices we can possibly get.  No one organization can say everything on behalf of everybody, so please do not think any more about closing up Dialysis Ethics.

[Rerun]

I AM NOT A WIDGET!

   

[plugger]

Plugger, support and advocacy for renal patients need not be territorial.  We need all of the voices we can possibly get.  No one organization can say everything on behalf of everybody, so please do not think any more about closing up Dialysis Ethics.

Nah, I won't close it.  I still think we have a place in all this.  And not now since the individual advocacies have gotten so much easier!  Larry Hall took about two years according to Arlene , recent ones have taken more like days!  So even though the challenge maybe gone, we will stick around and stick with it (actually, I think Arlene has been very happy about the lack of a challenge).

The more eyes looking at the underbelly of this the better.  I must have been crazy when I started to think we weren't needed anymore!  And thank you for the encouragement!