The Long Dialysis Weekend Might Kill You, But We Won't Change

[Hemodoc]

By Peter Laird, MD

The NEJM of medicine recently published an article on evidence of the long dialysis weekend associated with an increased risk of cardiac death. This is not new information, in fact, Dr. Carl Kjellstrand noted the "unphysiology" of thrice weekly, short dialysis back in 1975 (here).  In his treatise nearly 40 years ago, Dr. Kjellstrand showed convincing data that the then newly adopted thrice weekly short dialysis schedule popularized by large dialysis organizations is harmful to patients. In a historical review by Dr. Blagg, Dr. Ing, Dr. Berry and Dr. Kjellstrand, the rational basis of more frequent hemodialysis is described in part due to the discoveries of unphysiology by Dr. Kjellstrand in the early 1970's:

The Rationale for More Frequent Hemodialysis – ‘Unphysiology’

In the early 1970s, Kjellstrand et al. [12, 13] investigated factors related the untoward effects of dialysis. They showed that large fluctuations in body weight, electrolytes, osmolality, and urea concentration were more important with respect to morbidity than concentrations of small uremic toxins or middle molecules. This led them to formulate the ‘unphysiology’ hypothesis which suggested that wide swings of solutes and fluids in the body were significant causes of morbidity in dialysis patients. Daily or continuous dialysis would more closely mimic the function of the native kidney by reducing the magnitude of solute and fluid oscillations and so would be expected to be superior to the usual intermittent dialysis regimens.

The debate over the long dialysis weekend is not a new argument at all. It is a forty year debate based not on clinical evidence in the end ananlysis but instead on the business of dialysis.  The thrice weekly dialysis schedule came about through the need to spread limited resources to keep as many people alive as possible. There has never been a single randomized and controlled trial setting this "standard" schedule, it was a business and financial decision that holds dialysis patients in America today prisoners of these fatal long weekends. Yet, instead of discussing how we can change this situation, many bloggers and influential nephrologists are calling for more studies before we change anything.

Interdialysis interval and mortality - dangers of a long weekend?

The data provides a compelling reason to do an adequately powered randomised controlled trial examing the impact of dialysis frequency and duration on clinical outcomes - though the logistical and funding issues around such a trial would be challenging to say the least.

How bad is the long break for dialysis patients?

What's next?: Further research is NEEDED before wide-spread practice alteration is warranted particularly given the profound policy implications, but our patients deserve this now. Specifically, we must determine:

o Optimal dialysis scheduling

o Patient preferences regarding frequency and duration (i.e.... will they come??)

o Cost-effectivness analyses (will more frequent HD reduce morbidity and thus cost?)

Mortlity Increases After 2-Day Interdialytic Intervals

Despite the study's limitations, the authors conclude the results provide sufficient clinical rationale for conducting a controlled trial assessing how dialysis services are provided.

It is time for action instead of further studies. The issue of more frequent and longer duration hemodialysis is a settled body of literature dating back to the 1960's and includes the recent FHN randomized and controlled trial which is largely ignored. Daily dialyis is a better solution and when applied in the setting of the home, it becomes the most cost effective and clinically beneficial dialysis modality. 

I am grateful for one more well done study, but I see no need for any delay in implementing more frequent hemodialysis. In the study in question from the NEJM, the most important statistic to consider is that 41% of the patients in this study died over a two year period of time. With more frequent hemodialysis and of longer duration, that number could have been reduced by more than 60% according to several observation studies. It is time to place wasted lives at a higher importance than maximizing profit margins for Fresenius, Davita and the other giants of the dialysis industry.

How quickly we forget that the Frequent Hemodialysis Network Trial came about by observational data suggesting higher mortality with thrice weekly hemodialysis back in the 1990's. Here we are nearly 20 years later and all that the dialysis pundits can state after a compelling study showing further evidence that the long dialysis weekend kills the patients that dialysis is meant to keep alive is a call to more studies.  When will we wake up to the circle of death surrounding all of these studies that continue to propagate more government grants for further study yet never apply the findings to saving lives.

The definititive randomized and controlled trial of adequate power is an impossible request since it would involve over 5000 patients, a number equal to the number of home hemodialysis patients in America today.

High-Frequency Hemodialysis: Rationale for Randomized Clinical Trials

Given these uncertainties, we do not have sufficient data on the effects of daily and nocturnal hemodialysis to advocate for its widespread use and underwrite its cost. In 2001, Chertow (19) argued that a RCT of frequent hemodialysis was necessary to answer the fundamental questions of whether these treatments improve outcomes and, if so, by how much. He urged that the primary outcome of such a trial should be mortality alone or mortality combined with a major morbid event. . .

When these investigators considered study design, it became increasingly clear that a study that is powered to detect a mortality effect was not feasible at this time. We estimate that currently 55 centers in the United States and Canada are performing frequent hemodialysis five times per week or more. These centers are dialyzing a total of approximately 600 patients with high-frequency hemodialysis at home or in-center. Power analysis showed us that with 1 yr of follow-up, we would need to enroll >3500 patients in the daily study and >5000 in the nocturnal study to achieve 90% power to detect a relatively substantial 30% reduction in mortality.

Ten years after the calls for the FHN randomized and controlled trial, forty years after Dr. Kjellstrand's unphysiology reports and over firty years since Dr. Scribner urged America to save lives, we can progress no further than to call for more study. History will not look kindly on this part of our American history that gave us the highest mortality rate for dialysis patients in the developed world. It is time indeed to apply what we have already learned and stop the catch 22 debates on more frequent hemodialysis that only propagate further study and little or no corrective action.

http://www.hemodoc.com/2011/09/the-long-dialysis-weekend-might-kill-you-but-we-wont-change-.html

[Desert Dancer]

Honestly, it seems to me that a three-year old could grasp this concept:

Normal kidneys: 168 hours per week
Conventional dialysis: 12 hours per week
Home hemo: 20, 30 or more hours per week

Hmm. Now which one comes closer to mimicking actual kidney function? Anyone? Bueller?

And really, do they think someone like me (on nocturnal home hemo) is ACTUALLY going to risk being randomized into conventional in-center dialysis for one of their idiotic studies? Hell, no.

They need to pull their oh-so-scientific thumbs out of their oh-so-timid asses and start pushing for what's right for their patients.

[Bill Peckham]

I dismiss the patient won't come contentions.


The dialyzors don't have agency. (Well, aside from the choice to use incenter (assuming they made a choice))

[Hemodoc]

I dismiss the patient won't come contentions.


The dialyzors don't have agency. (Well, aside from the choice to use incenter (assuming they made a choice))

Bill, given the fact that the majority of dialysis patients do not have informed consent on home hemodialysis options, it is no wonder that there is not as large a demand for optimal hemodialysis. The negative perception of dialysis throughout the entire health care system adds to the negative outlook by patients. Add the insatiable appetite of the media for any transplant story and it becomes a perfect storm against patients choosing this therapy even though at least 30% or more could easily handle home hemodialysis.

New Zealand has approximately 25% of their patients on home hemodialysis already and they continue to increase. the American dialysis story is one of greed and profiteering as Dr. Scribner noted so many years ago. Sadly, not much has changed since that time.

[MooseMom]

Yeah, the latest blog entry over at Renal Fellow Network was about this subject, and my reaction to it was the same as yours, ie, we need more RCT really?

And Bill, I've seen your arguments over at Uremic Frost re this silly idea that dialyzors can't possibly EVER want MORE dialysis!   Patients won't choose something they don't even know exists.  I was very disappointed that the blogger over there just blew us all off with the "opening dialysis clinics every day is harder than you think" tripe.  It wouldn't be hard; no one wants to spend the money, that's all.

I still just really do not understand any mindset that basically tells us that we must dialyze at home if we want the best treatment for ourselves, that a medical facility is actually the LAST place where you can expect the best treatment.  Do nephs really think our kidneys work any better on the weekend?  It's nothing more than not wanting to spend the money.

Well you know what?  I don't think dialysis providers/nephs are going to be able to get away with this much longer, I really don't.  People are educating themselves more and more, and I suspect that we wouldn't be having this conversation just five years ago.  Now people are questioning the status quo, so at least it is a beginning.  I know that too many patients don't have informed consent on HHD options, but I am convinced that this will change as time goes on.  We are getting new members on IHD every single day, so every single day there is the hope that one more patient will at least learn that HHD exists.

[Hemodoc]

Yeah, the latest blog entry over at Renal Fellow Network was about this subject, and my reaction to it was the same as yours, ie, we need more RCT really?

And Bill, I've seen your arguments over at Uremic Frost re this silly idea that dialyzors can't possibly EVER want MORE dialysis!   Patients won't choose something they don't even know exists.  I was very disappointed that the blogger over there just blew us all off with the "opening dialysis clinics every day is harder than you think" tripe.  It wouldn't be hard; no one wants to spend the money, that's all.

I still just really do not understand any mindset that basically tells us that we must dialyze at home if we want the best treatment for ourselves, that a medical facility is actually the LAST place where you can expect the best treatment.  Do nephs really think our kidneys work any better on the weekend?  It's nothing more than not wanting to spend the money.

Well you know what?  I don't think dialysis providers/nephs are going to be able to get away with this much longer, I really don't.  People are educating themselves more and more, and I suspect that we wouldn't be having this conversation just five years ago.  Now people are questioning the status quo, so at least it is a beginning.  I know that too many patients don't have informed consent on HHD options, but I am convinced that this will change as time goes on.  We are getting new members on IHD every single day, so every single day there is the hope that one more patient will at least learn that HHD exists.

Dear Moosemom, we are gaining a critical mass of home hemodialysis patients that are very vocal and active. With over 5000 dialysis patients on home hemodialysis, it truly is a matter of time in many ways. Sadly, I do not look to our health care professionals in general as the solution since they are motivated by financial incentives much more than they are motivated by humanitarian goals. It is a sad commentary on my profession, but after becoming a dialysis patient myself, I have no other conclusion that I can come to now at this point in time.

[MooseMom]

I agree that healthcare professionals will not be leading the way in this particular battle, and that might make it harder for patients to win.  But those of us who are able to be vocal can do great good for those in our community who are not well enough to fight.  We can lead the way.  You are leading the way, and that's no small feat.  It won't be easy, but every patient that chooses home hemo and is successful and happy and healthy (and working!) is a big victory.

[Iwannabean]

I have only recently thought about home hemodialysis, but I'm a little scared .  Help me!~~~

Iwannabean

[jbeany]

I have only recently thought about home hemodialysis, but I'm a little scared .  Help me!~~~

Iwannabean

If you are determined to do it, you can find a way to make it work!  People have done it alone, in little apartments, in rural areas in the middle of nowhere, with NxStage and with standard D equipment.  One way or another, it's possible to get the best treatment if you are willing to work for it.

[MooseMom]

I have only recently thought about home hemodialysis, but I'm a little scared .  Help me!~~~

Iwannabean

Oh geez, dialysis in and of itself is scary no matter which modality to choose.  I haven't started dialysis yet, and I've been panicking for 7 years!   And I mean really panic to the point of trying hypnotherapy, psychiatry and biofeedback to help me calm down.  One day I sat myself down and made myself define my fear.  When fear is amorphic, you don't know how to tackle it.  So, I needed to capture it and define it.  I instantly realized that what frightened me was the notion of having a life-saving, time consuming, catastrophic treatment disable me forever.  I watched my mom on dialysis for 5 years, so I had some experience with clinics in several locales (my mom liked to travel).  I saw her struggle after a treatment to get home and make dinner and keep her house clean.  She was becoming disabled before my eyes, and while dialysis kept her alive, it never restored anything in her life.  I didn't want that to happen to me, and that's when I started really doing my homework and looking into home hemo.

To be fair, what I'd ideally like is to be able to do nocturnal at a clinic.  My clinic is only a 5 minute drive away, so that would spare me having all the dialysis crap in my house.  I would still want to self -cannulate because another fear I have is having some poorly trained tech destroying my fistula.  But at the moment, that's not gonna happen, so the next best thing is nocturnal home hemo.  Why not dialyze while you sleep?  Makes sense, doesn't it?  And being at home means I don't have to fight blizzards in the winter!

Everything about dialysis is scary, but once you find out what scares you the most, then you can be pro-active.  I figure if other people can do it, I can, too.

[malaka]

My nephrologist suggested home dialysis as first line dialysis for me.  While I'm not quite there yet,  he told me that my life would be more normal on home dialysis and that I would probably do better, too.   Being diabetic with history of two abdominal surgeries, I'm not a good candidate for peritoneal dialysis, so if I can aim the needles properly, I'll be on home dialysis.  At least that's the plan. 

I guess I'll get to watch The View, Oprah, Judge Judy, etc.  Just kidding. 

[lmunchkin]

For us it wasnt just getting better dialysis, it was the idea of being at HOME.  We control his treatments!  We do it when we want, to suit our time frames, as long as he gets his D. for about 3 to 3:30 hrs a day 5 to 6 days a week, he is fine!  Much better than the InCenter.  I don't have this disease, but I can SEE a huge change in my husbands health since doing NxStage at home.

We went incenter for almost a year and we just couldn't hack it period!  Even if he was getting excellent D there (which he didnt) we still prefer doing it at home.  You don't have to go anywhere to do it or have it done.  And next week, we are taking a long trip (9hour drive) to Fla.  Thanks to this awsome machine (NxStage) we will be able to do something we have not done since 2003!  We are pumped!!!! And He will still get same D. he has been getting all along with NxStage.
 
Look, this home D. can be done by anyone who has the desire to do and learn something that will make one feel better!  No its not perfect, but it is much better than an assembly line of chairs, IMO.  I just did not like the way they treated my husband and others in the clinics, so we were eager when his neph. mentioned NxStage to us.

Please, all of you who are inquiring Home D., at least give it a try!  Yes it takes commitment, but life is full of commitments, right? It will be alot to learn at first, but the rewards are worth it.  Just treat it like a new job.  Learn by doing it repetitively.  Soon, after you have settled (nerves) down with it, you too, will be pushing Home D.

lmunchkin   

P.S. The one's who have gotten or are getting a transplant, isnt one of the criterior that you be "as well as possible" for when that moment comes.  You just can't get the best you can get , in centers!  I believe that InCenters should be used for ER only! Just my take on it.

[MooseMom]

lmunchkin, you must be so proud of yourself and of your husband.  You two are great examples on how to be successful on dialysis.  Thanks so much for all of your posts and for sharing all of your experiences with us.

[lmunchkin]

No maam, THANK YOU, MM and everyone on IHD.  This site has been and inspiration to me with all that my husband has gone through!  Seriously, Iam so thankful to everyone!  I love to share my experiences, but I love to read and learn from you and others on IHD.  So no maam, I thank you all!

lmunchkin   

[tyefly]

Yes Lmunchkin......   truely is the greatest life to do things on your own  at home....plus go places... I love to go places....   have a great time in Florida.....    and  I agree with you completely ....this site provides such wonderfull information... I have learned so much here from so many people....   

Today is a good day...

[lmunchkin]

Thanks Tyfly.  We were so pleased to hear of your transplant.  I remember you encouraging me to do this NxStage and I could never thank you enough!  It really has been a Blessing and we appreciate your "pushing It!"

Yea, it was "Mind Boggling" at first, (got to have a brain first), but so glad I stuck with it, cause I am reaping the rewards of it now!

Again, Thanks, and I need to get my     to bed. Work comes early folks!  Good nite and yes, "today is a really good day!"

lmunchkin   

[Iwannabean]

Thanks for the info, I am looking into the NX stage.

Iwannabean

[lmunchkin]

Iwannabean, there are other types of Home D choices.  Look in to all of them, just get out of the centers if you can!  Glad you are wanting this!  You  will not be Sorry, I can assure you.

lmunchkin