NY Times Dialysis Article Provokes Fear

[Hemodoc]

By Peter Laird, MD

The NY Times stirred up the waters of debate on the Federal ESRD with it's provocative article titled When Ailments Pile Up, Asking Patients to Rethink Free Dialysis. The author, Gina Kolata in my opinion promotes the concept that the Federal ESRD program is essentially a failure in that far too many of the patients treated are at the end of their lives and are given futile and costly care that does not extend any meaningful life:

Dialysis is difficult, especially for the old and sick. Most of the nation’s 400,000 dialysis patients spend several hours, three days a week, hooked up to a machine, and additional time traveling back and forth to the clinic.

They have to restrict salt and fluids, and the procedure is so exhausting that some patients rest for the remainder of the day. Although dialysis may alleviate symptoms like fluid accumulation in the legs or lungs, it can lead to dizziness, weakness, leg cramps, nausea and other problems. Complications like bloodstream infections or clogged blood vessels where the dialysis needles are placed are common, often requiring surgery or hospital stays. Ultimately, about one patient in five is unwilling to go on with it. . .

Meanwhile, costs are soaring — end-stage kidney disease will cost the nation an estimated $40 billion to $50 billion this year. And doctors are recommending dialysis sooner, even though recent studies have found that an early start confers no additional benefit.

The author's statement that the ESRD program adds $40 billion to $50 billion this year when in actuality the costs for the Federal government are half that number, around $20 billion, about 6-7% of the total Medicare budget. Certainly this is a large sum, but the remainder is from private insurance coverage which private citizens have paid through their own contributions.

In addition, the ESRD program is a limited program for patients less than 65 who are not already enrolled in Medicare. Bill Peckham had a very interesting post a short while back breaking down the fact that of the 400,000 dialysis patients in America, only about 24,000 are less than the age of 65. Those over the age of 65 are covered by the Medicare bill passed in 1965 by Lyndon Johnson.  Thus, by Bill's account, the total ESRD program costs are in the neighborhood of $1 billion, and certainly less than $2 billion. Further, the NY Times graph on this issue starts at the age of 65, once again, all of these dialysis patients are covered by ordinary Medicare, not the ESRD program for patients less than the age of 65 .

In addition, the NY Times lists the common complications of the current American style dialysis therapy predominated by the large for-profit dialysis organizations correctly, but fails to show that was not the original intent of the ESRD program either. In 1973, the in-center costs for hemodialysis were ~$30,000 per year, while the home dialysis costs were ~$7000 a year for an established patient and double that for the first year of home dialysis noted in an article by Richard Rettig, yet, America abandoned the home program in favor of the in-center "lousy care" we have today.  In addition, the standard of care was dialysis in home thrice weekly, overnight for 8-9 hours yielding rehabilitated patients most of whom still worked. If we are going to discuss the original intentions of the ESRD program, let's likewise discuss the initial conditions and what the program has degenerated into by virtue of the undue influence of for-profit dialysis companies.

Lastly, reading through the responses and comments to this article I was struck by the number of people who genuinely fear the loss of autonomous control over end of life decisions if the government were to act upon the ideas promoted by this author. The benefits of optimally performed dialysis restores life at a significant cost savings. 

Instead of focusing on the small percentage of elderly patients who truly have in many ways come to the end of their life with difficult decisions to make, let us keep our focus on the overwhelming majority of patients who benefit from this life saving treatment and return to the principles present at the origin of the ESRD program in 1973. Short sighted cost cutting is what got us into this mess in the first place being penny wise and pound foolish with a shadow of the intended dosage of dialysis now the standard of care. No wonder we keep discussing our poor outcomes, how could they be otherwise when you give too little and not enough of proper dialysis as practiced in the 1960's. If there are any stories that the NY Times needs to tell, that is the one we should hear.

http://www.hemodoc.com/2011/04/ny-times-dialysis-article-provokes-fear-.html

[MooseMom]

I have to say that I just didn't read this article that way.  Did I miss something?  I didn't get the impression that the author was saying that the Federal ESRD program was a failure, rather, that it is inappropriately applied to those patients with many co-morbidities and to those for whom dialysis prolongs nothing but suffering.  Dialysis can be torture for some people. 

I don't think the problem is with the program.  I think the problem is with nephs who think they can make a buck off of torturing very very sick people and pushing dialysis onto them and onto their families.  I think the problem is with the dearth of pallitive care in this country.  I think that's the point that the article was trying to make. 

I'm not sure which are the ideas that you see being promoted by the author.  Would you mind explaining that a bit more?

[Hemodoc]

I have to say that I just didn't read this article that way.  Did I miss something?  I didn't get the impression that the author was saying that the Federal ESRD program was a failure, rather, that it is inappropriately applied to those patients with many co-morbidities and to those for whom dialysis prolongs nothing but suffering.  Dialysis can be torture for some people. 

I don't think the problem is with the program.  I think the problem is with nephs who think they can make a buck off of torturing very very sick people and pushing dialysis onto them and onto their families.  I think the problem is with the dearth of pallitive care in this country.  I think that's the point that the article was trying to make. 

I'm not sure which are the ideas that you see being promoted by the author.  Would you mind explaining that a bit more?

Dear MooseMom, I am planning on writing a follow up article on "Shared Decision-Making" which the RPA has promoted for over 10 years.  If I am able to correctly portray the differences between patient autonomy and shared decision-making, then my negative outlook on this article will likely be more apparent. Hang in there, I will get it out as soon as I can. 

I believe after you take a look at the article in light of the ethical framework of shared decision-making, you may look at the article in a different light.

[noahvale]

**

[Hemodoc]

@HEMODOC - I suggest you contact the NYT, present your credentials and ask for the opportunity to rebut the article in print.  You can continue to eloquently opine on IHD and on your blog until hell freezes over, however, it will be to no avail in swaying public sentiment until you get a national audience.

Plus, as I mentioned a few months back, the ESRD Program has a huge target on its back with Obamacare and the nationalization of our country's medical delivery of care.  As I responded to you back in January, I have concerns with Donald Berwick, the Administrator of CMS. I stated, "If there is a push for extended funding to cover the more frequent dialysis modality, there will have to be comprises to the esrd program.  I see that as age and co-morbidity disqualifers."  The NYT article has Berwick's fingerprints all over it.  And, the NYT elitists are more than willing to go along.

Dear Noahvale, thank you for your suggestion. I will see if they have that sort of process in place. On the surface, I doubt that they would publish me comments, but you are correct, it may be worth a try.

[Hemodoc]

I have to say that I just didn't read this article that way.  Did I miss something?  I didn't get the impression that the author was saying that the Federal ESRD program was a failure, rather, that it is inappropriately applied to those patients with many co-morbidities and to those for whom dialysis prolongs nothing but suffering.  Dialysis can be torture for some people. 

I don't think the problem is with the program.  I think the problem is with nephs who think they can make a buck off of torturing very very sick people and pushing dialysis onto them and onto their families.  I think the problem is with the dearth of pallitive care in this country.  I think that's the point that the article was trying to make. 

I'm not sure which are the ideas that you see being promoted by the author.  Would you mind explaining that a bit more?

Dear MooseMom, I have placed a second post on the ethics of the NY Times article.  I do agree completely that it is not a basic problem with the ESRD program at all, simply in the manner in which it evolved to where suboptimal standards of care ARE the standard of care.  It never had to be this way and it is not the way that the pioneers of dialysis designed and promoted.  We are talking about a total different treatment paradigm unfortunately designed to enrich the owners and operators of for-profit dialysis clinics.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html

[MooseMom]

Hemodoc, I've just read your "slippery slope" entry and now understand more completely.  Thanks for that.

For what it is worth, I agree with noahvale.  Although you do preach most eloquently, it is largely to the choir, and I would very much like to see you have a go at the NYT. 

[Hemodoc]

Hemodoc, I've just read your "slippery slope" entry and now understand more completely.  Thanks for that.

For what it is worth, I agree with noahvale.  Although you do preach most eloquently, it is largely to the choir, and I would very much like to see you have a go at the NYT.

I am not sure if that is feeding the sacrificial lamb to the lions?  LOL.  I will check it out.

[Hemodoc]

In all seriousness, perhaps not just me, but many that did not appreciate this article should write a letter to the editor.  Here is the link.

http://www.nytimes.com/content/help/site/editorial/letters/letters.html?ref=letters

[Stoday]

Europeans have a little experience of this sort of thinking. First, there are the obvious cases, such as have been described in the article. Then you can easily add more. Babies born with defects would need lifelong therapy with associated expense, so add them. Next, we can add the mentally retarded and so on.

A "mercy" euthanasia program was formulated in Europe in 1939, called "Aktion T 4", initially with careful constraints; three expert doctors who had to be unanimous when certifying this "treatment".

The usual mission creep occurred and before long the death list was expanded. Hospitals, mental institutions and care homes had to fill in questionnaires to identify those who suffered from schizophrenia, epilepsy, senile disorders, therapy resistant paralysis and syphilis, retardation, encephalitis, Huntington's chorea and other neurological conditions. This also applied to those who had been continuously in institutions for at least 5 years and were criminally insane, or were not of German or related blood, including Jews, Negroes, and Gypsies.

A catholic bishop found out about this policy and let the cat out of the bag. Hitler consequently formally suspended the policy in August 1941. In two years it had reduced the deadweight cost by 100,000 patients.

Of course, we now know that German plumbers continued to connect showers to gas instead of water pipes. And the program was only suspended in name.

Mighty oaks from little acorns grow.

[nm1921]

I was intrigued by Dr. Laird's comparison of hemodialysis today with that of the 1960's.  I raised the question with our head nurse (she's been at it for 30 years) and her take is that of course the training was different and there were no techs, but the machines are much improved as are the standards regarding gloves, masks, etc.  I myself take no position but I would greatly appreciate it if Dr. Laird would spell out what he meant.

nm1921

[Hemodoc]

I was intrigued by Dr. Laird's comparison of hemodialysis today with that of the 1960's.  I raised the question with our head nurse (she's been at it for 30 years) and her take is that of course the training was different and there were no techs, but the machines are much improved as are the standards regarding gloves, masks, etc.  I myself take no position but I would greatly appreciate it if Dr. Laird would spell out what he meant.

nm1921

Dear nm1921,

The reference to the 1960's was first of all the pioneers clinical criteria of enough dialysis when the patient felt well and could re-engage the world in normal activities of daily living and most returned to work.  They were able to accomplish this by treating the patient, not their numbers, not that having good labs is not important, but how the patient feels and is able to stay active is much more important.

Secondly, by virtue of necessity, the majority of patients were treated in their own home, thrice weekly for 8-9 hours each session, something that we are only now beginning to return to.

Third, for-profit dialysis as practiced in American dialysis units is looked on with incredible wonder by the other nations that have developed dialysis programs.  Our rapid fluid removal is a known predictor of death.  Our shortened dialysis times is a predictor of death.

I would point out that we have been doing dialysis now for over 50 years, not 30 so there will be very few people today who have the experience of optimal dialysis and rehabilitated patients as a goal of therapy that they had in the 1960's. Despite all of the advances in dialysis care with masks, gloves etc that your nurse listed, we are missing the single most important elements of longer and slower dialysis that was the standard of care for over 10 years at the beginning.

I wrote a post a while back that goes over the history of how we went from 27 hours of dialysis/week as standard to as low as 9 hours a week that many patients receive in America today. Once again, I am not the least surprised that your nurse did not know the real history of dialysis in America, it is a story that is a sad chapter in American medicine.

http://www.hemodoc.com/2010/12/a-tale-of-two-cities-the-story-of-dialysis-in-america.html

[tyefly]

with all said.... there are many people that choose to still do 9-12 hours a week....  and have lots of reasons why they do so....  some say  they dont want to spend more time doing more dialysis..... or  if ther doctor thought it was better to do more then they would.... 

I have a question of Peter...   I know that you are doing dialysis at home....are you doing extended or short daily and why have you choosen the one that you do...

Sadly   when I hear of people who are having really difficult times in center doing 9 to 12 hours a week and yet the center can do nothing to help.... why cant centers offer more dialysis for people that want it...

[Hemodoc]

with all said.... there are many people that choose to still do 9-12 hours a week....  and have lots of reasons why they do so....  some say  they dont want to spend more time doing more dialysis..... or  if ther doctor thought it was better to do more then they would.... 

I have a question of Peter...   I know that you are doing dialysis at home....are you doing extended or short daily and why have you choosen the one that you do...

Sadly   when I hear of people who are having really difficult times in center doing 9 to 12 hours a week and yet the center can do nothing to help.... why cant centers offer more dialysis for people that want it...

I do what is technically considered short daily dialysis, but I have extended to the edge of that definition at about 4.5 hours per session, 5.5 times a week or more.  We usually do 3 days on 1 day off to breath a little bit of time away from the machine.  I am going in for my check up tomorrow and we have I believe 26 days of dialysis since our last visit.  We have done this schedule for over a year and it works for us.

Currently, Kaiser in Southern CA does not offer NxStage nocturnal.  They will as soon as it is FDA approved.

The issue of getting people to do more dialysis is a challenge that I have engaged in with several of my old patients from my internal medicine practice who continue to choose to do the shortest sessions that they can get away with.  Clearly this is a poor survival strategy, but they simply won't hear it any other way.  Quite sad that we have the idea that dialysis itself is the problem when in reality, not getting enough dialysis is the true issue at hand. The solution to motivating patients to go home or do more is a difficult path to identify.  Even Northwest Kidney Centers has only 5% of their patient on home hemodialysis even when they offer patients a two week trial of daily dialysis incenter. If they can only achieve a very low number of home patients, I am not sure how we will move beyond that figure on a generalized basis.  That unfortunately paints a very bleak picture.

[MooseMom]

Quite sad that we have the idea that dialysis itself is the problem when in reality, not getting enough dialysis is the true issue at hand.

I think this is at the crux of the problem.  There is no doubt that dialysis is a burdensome treatment for probably the majority of patients.  I remember when my mother once phoned me with the "good news" that her neph was going to cut her time by 15 minutes.  At the time, I was none the wiser, and I was thrilled for her.  Now I know that what she should have been offered was MORE dialysis because the way she received her dialysis eventually killed her.

My mom felt awful on standard incenter thrice weekly treatments, so in her mind, that's what dialysis felt like.  Why would she possibly want to feel like that more often?  She didn't get the opportunity to learn that more dialysis could have made her feel better. 

[tyefly]

Yes... I agree... many people dont want to do more dialysis because they dont know that more dialysis WILL make them feel better.....   I dont understand the 15 min saving and how that can work.... 
 when I started in center  I was doing 3 hours  3 times a week....  I felt so good I was amazed....  but I was also given EPO and Iron and my anemia was being treated.... Hemoglobin was getting better....  So  going from feeling really tired, sick  and all that pre dialysis is....  I felt great with three hours... basically  9 hours a week.. After a period of time  I got use to that feeling.....   then when I went to Nxstage in a few months  I  felt even better doing 4 hrs 6 days a week..total 24 hours per week..... I felt even better.....   

But NOW   I am doing 8hrs   6 days a week   and I feel so good I cant remember feeling like this....(maybe when I was in my 20's )      Its amazing... I dont feel sick at all..  Sometime I feel so good I think in my mind that I dont need to do dialysis any more....  but we know that isn't true.... 

I wonder if I need to do this much dialysis.....  like others.... I wonder if I could do less and feel just as good...  I guess I could try to do less and watch my labs...but then our labs dong show everything....   Sometimes I even wonder if I want to get a transplant.... with all the anti rejection drugs that one needs to take and the risk associated with those....     anyway....just thoughts.....

[MooseMom]

tyeflyThat's a very good question...do you chance undermining your good health via good dialysis with the risks of transplantation? 

As for doing less dialysis, I don't know the answer to that, but I guess the only way to find out is to maybe do five nights instead of six and see how you feel.  It's more than just what your labs say...it's more about how you feel.  I'd be really interested to hear more about your thoughts on this issue, especially if you plan to experiment with length/frequency of treatment.

[rsudock]

TYFLY that gives me comfort to know that you feel "normal" with nocternal dialysis....just another reason I should buck up and get more dialysis!!! It is fear that stops me though....

xo,
R