« Dr. Carter, joined by Benton, helped by Ross and Hathaway, work to get Carter peeing again | Main | Who Lives? We do. »

March 14, 2009

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

Dori

Great post, Rich. I absolutely agree that EODD should become the new floor for hemodialysis. There are absolutely ZERO data to support a 3x/week schedule--and tons of accumulating evidence demonstrating how unphysiologic this historical-accident of a schedule is.

Next week, I'm meeting with my Congresswoman's health staffer, so spent most of Friday pulling together slides. One paper I found was by AJ Bleyer (Bleyer AJ et al, Kidney Int 1999;55(4):1553-9). In 1999, Bleyer was the first to do the analysis finding that the risk of death after the 2-day dialysis "weekend" was 50% HIGHER THAN ANY OTHER DAY OF THE WEEK.

In 2006, Bleyer and his associates did another analysis (Bleyer AJ et al, Kidney Int 2006; 69(12):2268-73). This time, they looked at the number of hours since the last dialysis treatment and the risk of a sudden death from cardiac causes. In the 12 hours right after the treatment ended, the risk of death was 70% higher. (Not too surprising--it's very hard on heart to suck off 45 hours worth of toxins and water in 3 hours). IN THE 12 HOURS BEFORE THE NEXT TREATMENT, THE DEATH RATE WAS TRIPLE.

This is what Dr. Carl Kjellstrand--who recently delivered a keynote address on this topic at the Annual Dialysis Conference in Houston--calls the "2-day killer gap." He will also point out, if you give him half a chance, that common sense doesn't require randomized controlled trials (RCTs). It's common sense that kidneys work 24/7 to maintain homeostasis (a constant internal environment in the body)--and that 3x/week treatments are UNPHYSIOLOGICAL and more likely to lead to poor outcomes than longer or more frequent treatments.

Dr. Kjellstrand will tell you that there has never been an RCT done to tell us whether it is better to jump out of an airplane with or without a parachute. He will point out that our knowledge that tobacco smoking causes cancer is from observational studies--not RCTs. (We can't randomly assign people to smoke for 30 or 40 years).

Interestingly, there has NEVER been an RCT of whether survival is better with dialysis than transplant. It seems you can't randomly assign folks to get a transplant. And, in fact, folks who get transplants are highly selected--in that they are screened both medically and psychologically. Yet the entire renal community acknowledges that transplant offers a better chance of survival than standard HD--or PD.

Hmmm. Longer and/or more frequent hemodialysis has what is probably a LESS selected population than transplant. Rich, you are an example of this--in that for a time you weren't eligible for the transplant list, yet you were doing short daily HD. And studies are now suggesting that longer and/or more frequent hemodialysis has survival that is comparable to deceased donor transplant.

It is well past time for CMS to acknowledge the physiological reality and common sense of dialysis--that more is better, and that the 2-day gap is a killer, responsible for (per Dr. Kjellstrand) an estimated 10,000 or more extra deaths in the US EACH YEAR.

Please sign the petition, folks. We can save lives if we can change this policy.

Bill Peckham

Great comment Dori. The only thing I would add is that EODD should save money on the total cost of supporting people with chronic kidney disease. The money saved to the system of avoiding one heart attack hospitalization like the one Rich had, would fund EODD for a year for 50 to 100 people. Not to mention the savings from emergency room visits that do not result in hospitalizations. Are all ER visits counted?

How many people have to get stat Ks or go to the ER to be told they need dialysis? How much does that cost? Avoiding a single visit would pay all or the bulk of the cost of one year of EODD.

I'm going to send Dori's comment to the people I already emailed my petition request. Asking those who signed to pass it along and those who have not signed to sign and then pass it along.

I think we can 10,000 signatures this month and that number of signatures would be very helpful as we consider how to move this issue forward.

Don

I signed and have encouraged a bunch to also sign. I'm seeing at least two obstacles to it becoming mainstream treatment.
1. Business Operation. I know of no in-center providers who provide services 7 days per week. I foressee a lot of resistance, not the least of all from staff who relish those Sundays off (With most having their spouse off Saturday, many don't want to work Saturday in the 1st place).
2. Patient Lifestyle. As helpful as additional hours on the machine are, I don't think many want more. Planning your life around a rotating
M-W-F-Su
Tu-Th-Sa
every other week schedule would radically complicate patient and caregiver schedules. I think every other day is a great option/choice for those who want it but is it too utopian of a vision for the real world?

Peter Laird, MD

Dear Don, I am sure that there are many barriers to implementing optimal dialysis including those that you have listed above. Yet, I have met many patients who simply don't feel well on the current thrice weekly dialysis, I am one of those. I have now been on standard treatment for two years and they have been a declining two years. It seems I am able to do less and less over time. It seems that I am dying like so many others a dialysis treatment too late and too little at a time.

I would like to look at the potential of flexible options to include every other day dialysis as well as others in departing from worst dialysis treatments that we have learned to do so well. I have had the benefit of EODD on a couple of occassions around holidays and you do simply feel better during that time. I would also like to see the options of thrice weekly in center nocturnal and of course the options of home dialysis as well, they are all within our grasp if we change our mindset.

I have been doing my own incenter self care since April 2008. I am still waiting for my home dialysis training even though home dialysis was my stated goal to my treatment team from day one. When I hear of other folks such as in Canada that requested and received quotidian dialysis within one week of the request, it is a reminder of how far America has to go. If other nations can do it, then what barriers are there really to America doing the same. It is not a new and ground breaking experiment, it is simply coming to the high international standards set DECADES ago by several nations.

I am begginning to wonder if America has lost it's "Can Do" mentality. Other nations work within the confines of optimal dialysis to the benefit of all with reduced hospital and secondary costs offsetting the upfront increases leaving total cost down. If those in charge truly wished to reduce the costs of American dialysis, then the barriers to optimal care would instantly vanish. Money talks.

I would further add, that many in the discussion blogs look at our reguest for this option and others as looking for more money into the system when in fact, we desire to make dialysis more cost effective. Optimal dialysis has that potential if only we can overcome the barrier of not being able to think outside of a MWF/TTS mindset. If America is that inflexible, then we have lost our "Can Do" temperment that brought us as far as we came in other portions of our economy. I for one believe that there is still a little left within.

America, are you satisfied with the worst dialysis treatment system in the entire world? If so, then simply do nothing, we are already there.

Sometimes, it is better to simply do something first even if it is not where we will end up. Someone, somewhere must some how shake the dust out of the official channels to advocate that our current system needs to be overhauled to make it the true gift of life that it can be and to streamline the finances at the same time to the benefit of all. I believe Rich has given is the someone, somewhere and some how to get a start on this. Thank you for joining him, but our work is only beginning not at an end.

Peter Laird, MD

Dear Don,

I would just add one other comment on the barriers to care. When evaluating treatment options such as EODD, the changes that need to be made to the entire system are insignificant when we start evaluating this against survival data. That really is the basis for this entire discussion and petition. The petition states the facts grimly for all to consider:

The U.S has the worst dialysis outcomes of any industrialized nation. Supporting every other day treatments will allow those managing their illness with conventional hemodialysis to avoid the ‘long weekend’ with no treatment—which many studies have shown triples the risk of sudden death from a heart attack. Even this won’t allow the U.S. to catch up; that won’t happen until longer and more frequent treatments are made more widely available. But it’s a start! Please give this vital change your support!

I know of no other medical condition that could improve survival to the degree that optimal dialysis can but is not. Where is the outrage, and for once in my medical career I ask, where are the lawyers? The data is evident. If America has any chance of continuing as a great nation, then that which should be done must be done or all is lost throughout our land. It is time for America to stand up and save lives and money at the same time.

Roberta Mikles

Considering providers want the best possible quality care for their patients, what are the chances of obtaining provider support. It would only make sense, to many of us, that providers support this petition, along with staff that administer treatments. I wonder how many facility staff are aware of this petition e.g. social workers, administrators, techs, etc. I also wonder how many that read this site, as well as renalweb.com, have forwarded the petition on to their coworkers, including physicians. I only see a few physician signatures. It would be wonderful to have providers support this and again, thanks to Rich, Bill and Dori for taking the effort to put the petition together.
Roberta Mikles, RN, Patient Advocate
RMiklesRN@aol.com

Rich Berkowitz

Peter, as usual you have made absolutely important points and we appreciate your support with the petition. But something you mentioned needs a bit of correction.

When you said, "I am sure that there are many barriers to implementing optimal dialysis including those that you have listed above." I don't believe Don was referring to optimal dialysis but eodD in-center. I agree, there will be some barriers. But I also believe they can be overcome. However, the most important thing to remember is that we don't pretend eodD is optimal dialysis. It should be seen as the minimum a dialyzor should have. It should not be a new standard for adequacy. Optimal is still the goal.

Bill Peckham

I've heard from people who are advocating for optimal dialysis that they are worried that this effort will hurt their efforts. I don't see that.

This petition is about the floor. Right now Medicare abetted by urea centered KDOQI guidelines set the floor at 3x/week. This petition is saying that floor is too low for too many people.

Advocates for optimal dialysis are working on the ceiling which should be 7x week nocturnal dialysis - true daily nocturnal. Obviously few people (frequent DSEN commentator Brian being one exception) will avail themselves of this option, at least at the moment, but a ceiling is suppose to afford some head room.

Rich and I have access to optimal-ish dialysis but we are still concerned about Peter and others consigned to 3x/week when they would choose EODD. Allowing routine reimbursement for EODD is still a good idea even if not every dialyzor will choose the option.

I think other advocates for reimbursement of optimal dialysis should support this petition. As a union carpenter let me extend the analogy and point out that it's easier to work on the ceiling when the floor isn't so far down.

Rich Berkowitz

Please Bill, let me have one night off!

Zach

"As a union carpenter let me extend the analogy and point out that it's easier to work on the ceiling when the floor isn't so far down."
~~~~~~~~~~

Five-foot high ceilings are a bit cramped.

Peter Laird, MD

Dear Rich, thank you for your correction. As in many issues, settling on definitions of what we mean is not simple. I see the solution to enacting "optimal" dialysis as a continuum away from our thrice weekly dialysis. Obviously, optimal will mean different things to different people. For some patients, they will not want more dialysis failing to understand that lack of dialysis causes most of their adverse symptoms.

EODD implementation will require an acknowledgement of the "unphysiology" of usual dialysis. In a great sense, implementing optimal dialysis is contingent upon this first recognition. Once that barrier is crossed, then the many variations of quotidian dialysis can be implemented.

I suspect that there will be many individual variations of optimal dialysis based also on lifestyle and work considerations. Perhaps simply recognizing any regimen that is based on reversing the theory of "unphysiology" and overcoming this reality will in fact be a form of optimal dialysis. If we define 7 days a week nocturnal as optimal dialysis, I would venture that is too strict a definition. Simply overcoming "unphysiology" with the many ways to do this is in my mind optimal.

Perhaps we are straining at a gnat on the different definitions of optimal, certainly EODD overcomes many aspects of "unphysiology" so perhaps not the final goal, but who can argue that it is not a form of optimal dialysis as well by recognition that the long weekend is one of our largest killers. In any case, it is a very important option in the various packages we would argue are optimal. I suspect we will not have simply one answer to this term.

The beauty of EODD is that it only requires two more dialysis sessions/month with significant health benefits for all and an amazing decline in adverse outcomes. The data clearly shows a continuum of benefits with increasing frequency and duration. Having the freedom of choice within that continuum is likewise perhaps the most important aspect of optimal dialysis, choice. So, many ways that we could define optimal and in my mind having the choice to make my own decision on what is optimal for myself is my definition of optimal dialysis as Bill eloquently mentioned above, choice in options is the optimal dialysis system. We have much work left to do.

Thank you for placing this issue at the forefront of many people who have not considered the plight of people as myself and hundreds of thousand other dialysis patients.

Rich Berkowitz

Or more simply put: Optimal dialysis is relative and to each dialyzor personal. At a point, lifestyle and QOL intersect and for each person the cross point is different.

But I would argue that for those patients that will not want more dialysis failing to understand that lack of dialysis causes most of their adverse symptoms have not met the threshold of optimal dialysis, even relatively.

Don

I feel like I really struck a nerve - w/o trying to. I certainly don't want to diminish the goal of patients getting optimal dialysis and enjoying QOL. I'm trying to get Sheila transitioned to home dialysis but ironically, her biggest fear is that she will become imprisoned at home by her dialysis rather than imprisoned at the dialysis center. As much as she hates having to endure the sessions, she relishes the social exposure and interaction. Is this unusual? We're still new at this and most of my observations are just that.

Rich Berkowitz

Don, I can understand Sheila's initial concerns about being trapped at home. Let's face it, none of us ever expected to dialyze at home. But none of ud ever expected to have to dialyze. If Sheila has dialyzed for a while she has probably settled into a routine, and as we know it's often difficult to change from something comfortable (or even uncomfortable).

I too made some friends at center, but by and large the social exposure doesn't sound as positive as hers. However, the longer one is at center, the more friends they lose. And that's not positive or comfortable.

There's also no doubt that home dialysis radically changes the complexion of home life — not just for the dialyzor but the entire family. It's a price everybody pays for their loved one to live a better life. But for this reason everybody should be part of the decision. Talk amongst yourselfs beforehand and come to the best decision for the entire family. I've seen many a dialyzor drop out of home dialysis because of a spouse not being able to deal with the new home environment.

But imprisoned? I see it as being the opposite. There's plenty of activities one can do while dialyzing. Now that I do nocturnal, my favorite activity is sleeping. Don't laugh! My wife has a saying that "sleep is sometimes the best use of your time". And with nocturnal, I have the complete use of my day — I'm normal again (as normal as I've ever been). But in waking moments, there's TV, surfing the web, listening to music, talking to friends on the phone, and spending time with the family. But best yet, I have the flexibility to dialyze at different time according to my schedulem and not the center's. I would be able to adjust the time that best fits the normalcy of doing things with my wifr and family at different times of the day. I can travel much more freely without the aggravation of booking a chair at a strange center. Imprisoned? I don't think so!

Far more important, I have regained my freedom and am much healthier. I am alive! But don't get me wrong. Home dialysis isn't for everybody, although I believe the best modalities are there. Over time I'm sure Sheila will tire of her "social exposure" at center. I'm confident she would love (too strong of a word?) home dialysis.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name is required. Email address will not be displayed with the comment.)

2 sen logo

Search SEN


  • WWW
    WWW.BILLPECKHAM.COM

SEN in the Press

WKD March 8, 2018

  • WorldKidneyDay 2011

April 2018

Sun Mon Tue Wed Thu Fri Sat
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30          
Blog powered by Typepad