Dying for Improvement: The Not-So-Hidden Cost of Harsh In-Center HD?

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on March 10th, 2016.
Dying for Improvement: The Not-So-Hidden Cost of Harsh In-Center HD?

I have long wondered if the high rate of death in the first 90-120 days of U.S. in-center HD (35% of first-year deaths occur during this period!)1 is caused—at least in part—by overly harsh ultrafiltration. Could pulling too much water or pulling it too quickly be the root cause of sudden cardiac death and of newbies choosing to stop dialysis? I can’t prove this. But, hear me out.

Analysis of first-year cause-of-death data from the collaborative Peer Kidney Care Initiative (PEER) finds that sudden cardiac death is highest in the first month of dialysis—at 30.1%.2 One interpretation might be that already-fragile hearts are further compromised by the enormous up-and-down volume swings of standard in-center HD as practiced in the U.S.—that is, by organ stunning3

And, Renal and Urology News recently published an analysis of the PEER data, finding that U.S. rates of early withdrawal from dialysis (in the first few months) tripled between 2004 and 2011.4 One reason suggested by lead investigator Dr. James B. Wetmore, is that some patients start dialysis who perhaps should not. We all know that, for various reasons, this happens.

But, the other reason he offered troubles me much more: “Voluntary withdrawal from dialysis often occurs when a patient perceives that dialysis has become unduly burdensome.1 Are we making initiation of a life-saving treatment so aversive that people choose to stop treatment and die rather than endure the torture?

Dialysis withdrawal peaks in the 2nd month of dialysis5—perhaps after too many episodes of “crashing” and experiencing lengthy recovery time post-treatment…

Here are some things new dialyzors have said recently:

  • When I first started, I was sick, dizzy and weak for a long time.”
  • It took me 2 1/2 to 3 years before I felt good.”
  • I hate being sick. I feel guilty that I cannot be the wife, mother, & grandmother that I want to be. My husband’s retirement is not at all what I imagined it would be. He nursed both his parents, in our home, until they passed away (cancer). Now he is a full-time caregiver to me. Our lives revolve around 3 x a week in-center hemo. Those days are shot as I always have to lay down when I get home.
”
  • Quantity of life isn't worth it if your quality of life sucks.”

It is worth noting that the first few months of dialysis may be most lethal (see the USRDS 2014 graph, below) because this is when patients, who may still have substantial residual kidney function, are “challenged”—by purposely causing intradialytic hypotension—to set their ultrafiltration goals.

I was there, in 1996, when the Dialysis Outcomes and Quality Initiative (DOQI) Hemodialysis Adequacy Work Group considered the difficulties of identifying dry weight. Their answer at that time was to “challenge” people until they cramped, then back off. Today, we know that such cramping is a likely symptom of intradialytic hypotension and myocardial stunning—a driver of lengthy recovery time that leads to poor quality of life and predicts drastically diminished survival.6

But, 20 years later, we still “challenge” fluid in people starting dialysis. There is technology to measure water levels in the blood. Critline. Bioimpedance. None of this is yet universally accepted—but in-center HD torment is still considered a “normal” aspect of treatment. It’s not normal for dialyzors, though:

  • I cramped from my toes to my mid thigh. Lasted over 25 minutes even with fluid given. I am diligent with my diet. Dialysis was 2 days ago and my leg is still so very painful from the violent muscle contraction that came on like lightning.”
  • Wednesday was my second time getting cramps. It started in my foot and worked its way up my leg. This went on for about 30 mins. The cramps were so bad I could barely walk. It still hurts when I put weight on my leg, and it's pure torture going up and down my stairs. Is this normal or should be worried?
  • With about 15 minutes left in treatment, I got some of the worst cramps in my legs. They were indescribable. My left foot was cocked so hard it was turned in. I could not even put it on the floor. They ended up pushing almost a full bag of fluid back into me, but the damage was already done. I could barely walk afterwards.”

I would dearly love to see up-to-date, U.S. research on why people choose to stop dialysis in the first few months—and whether we can act to prevent this, if the reason is treatment intolerance. Palliative Care is drastically underutilized in the dialysis population, for example. It is routinely—and wrongly—confused with Hospice. Palliative Care teams can be consulted for pain, stress, and symptoms resulting from any chronic disease. For patients who are not within 6 months of death—but also can’t tolerate several painful hours in an uncomfortable chair, for example, bringing in Palliative Care is one whole-person approach to improving comfort. And, of course, so could offering slower, gentler ultrafiltration and using technology to determine fluid overload.

The good news is, there are other treatment options. Helping people match their dialysis choice to their lives may be a promising intervention to address depression, hopelessness, job loss and overaggressive ultrafiltration. When people’s lives look more like they want them to, and they can continue to do things they value, life is likely to seem worth living. This is also worth testing. Perhaps hope can be a strategy. Patients who have switched certainly feel a difference:

  • Once I switched to home hemo and then nocturnal, I felt like a new person.”
  • I am miserable. But I recently lookied into home hemo and am feeling excited about starting the training. It's a big undertaking, but it would allow me so much more freedom with diet and fluid intake, and I will feel so much better because the toxins don't have as much time to build up in my system between treatments. I think it's going to make a big difference for me.
  • All forms of dialysis are not created equal. Personally I'd explore EVERY different possible modality before giving up on it because some can be as different as night and day.”

  1. Broers NJH, Cuijpers ACM, van der Sande FM, Leunissen KML, Kooman JP. The first year on haemodialysis: a critical transition. Clin Kidney J. 2015 8:271-7
  2. http://www.peerkidney.org/report/distribution-causes-death-during-first-year-dialysis
  3. Schatell D. Hearts in the Crossfire: Standard Hemodialysis Stuns Organs—But, There is Hope. http://www.homedialysis.org/news-and-research/blog/89-hearts-in-the-crossfire-standard-hemodialysis-stuns-organs-but-there-is-hope
  4. Charnow, JA. Early dialysis withdrawal on the rise. Renal Neph News. Accessed 3/9/2016. http://www.renalandurologynews.com/kidney-week-2015-dialysis/early-dialysis-withdrawal-on-the-rise/article/452060/
  5. http://www.peerkidney.org/report/cause-specific-mortality-incident-dialysis-patients
  6. Rayner HC, Zepel L, Fuller DS, Morgenstern H, Karaboyas A, Culleton BF, Mapes DL, Lopes AA, Gillespie BW, Hasegawa T, Saran R, Tentori F, Hecking M, Pisoni RL, Robinson BM. Recovery time, quality of life, and mortality in hemodialysis patients: the Dialysis Outcomes and Practice Patterns Study (DOPPS). Am J Kidney Dis. 2014 Jul;64(1):86-94

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Comments

  • Theodôr

    Mar 18, 2:40 AM

    It is my strong belief that the general condition of patients on dialysis varies a lot between cohorts and countries. Also we talk a lot with our patients if dialysis is the right thing to do in the first place. This is not rationing but some patients are starting dialysis where you don't need to be a medic to know this is short term management. Ofcourse patients have the right to get treatment, and in most cases will grasp that anyway which is understandable ofcourse. Another issue is the fact most US patients still have a very high number of catheters for their dialysis. To me it is very disappointing the Fistula 1st Project unfortunately did not achieve its goal. My last point: Educate patients to achieve a healthy BMI ( not the fashion one, but one within reach for the patient!) and keep a very restricted fluid intake regimen!
    Sw-ers from CA achieved supporting patients with their "Making peace with Fluids" program and to me that is key when talking about strain on Cardio-Vascular at risk factors!
    Cheers, Theodôr

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    • Dori

      Mar 18, 10:23 AM

      Fistula First DID significantly increase fistula use vs. catheters in the U.S. But, a major limiting factor here is our practice of using blood flow rates of 450 and 500--which only a minority of fistulas can withstand. Countries like Japan with extremely high fistula rates tend to have far lower blood flow rates--closer to 250-300. I suspect that Europe uses lower blood flow rates as well. If CMS paid for dialysis by the hour, we would see longer treatments, and perhaps slower blood flows as well... Patients who get optimal dialysis don't need strict fluid limits, either.

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  • David L Rosenblooom

    Mar 11, 6:01 PM

    In the recently completed Delphi survey, SONG-HD (Standardized Outcomes in Nephrology - Hemodialysis), results showed a wide variance between patient/care partner preferences and those of the healthcare professionals. Death/mortality was on top of the medical professionals list. It was their primary concern. Yet it ranked only 11th on the patient list. Hospitalization was 6th on the healthcare ranking, yet second to last (19th) on the patient list.

    Dori's early dialysis mortality statistics show a continuing reluctance to change standard in-center treatment to accommodate desired patient outcomes.

    This should tell all of us something very important about priorities and raise the question "why do we continue to follow outdated treatment protocols when they don't work?" Are we stupid? Do we really care about quality of life?

    If most nephrologists really care about saving lives, as they claim, (and I believe them), then as a profession, they need to stop treating patients with a "one-size-fits-all" mentality and look at better ways to dialyze or else provide palliative care, as Dori points out. They need to spend much more time with their patients and listen to what is important to them. The best nephrologists, those I know personally and respect highly, have already done so.

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    • Dori

      Mar 16, 10:12 AM

      Great questions, David! I would add, "Why are we still doing in-center HD just 3 days a week when we KNOW that an estimated 10,000 deaths a year will occur in the U.S. due to this schedule alone?" How much data do we need!?

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  • Talker

    Mar 11, 3:55 AM

    Very interesting article.
    "I have long wondered if the high rate of death in the first 90-120 days of U.S. in-center HD (35%!)1 is caused—at least in part—by overly harsh ultrafiltration", now that information is not some thing a new to dialysis patient would want to be reading about, much less, doing.
    In the post above is stated '100,000 new dialysis patients in the United States every year.'
    What amazes me even more though and as I see it, the overlooked aspect of 'why are there so many health problems' showing up as kidney related.

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    • Dori

      Mar 16, 10:14 AM

      Most kidney problems in the U.S. -- about 2/3 -- are due to high blood pressure and type 2 diabetes, and often both at the same time. (We call this the "double whammy." Both high blood pressure and diabetes have strong lifestyle components. Lack of exercise. Eating a diet that is highly processed with few fruits or vegetables. And GMOs, BPA in food can linings, and pesticides are likely also causes. Most Americans eat fast food EVERY day. We are what we eat!

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  • Mel Hodge

    Mar 10, 6:55 PM

    It is incomprehensible to me why killing (or pushing into suicide) a substantial percentage of new dialysis patients continues to be tolerated. You might offer the standard response, "More study is needed." But consider that there are 100,000 new dialysis patients in the United States every year. Study the chart in Dori's blog. Then try to estimate the number of additional lives that will be lost during the years it would take for more studies (and then undoubtedly, more studies). It is likely you will come up with a number in many tens of thousands.

    I don't know about you, but I know that if I were running a dialysis organization I could not sleep until I did something about this problem. While undoubtedly a more sophisticated solution could be developed over time, I would put out a one sentence directive before the sun went down that no patient should be dialyzed with an ultrafiltration rate higher than 10 mL/kilogram/hour. If you grumble that this would cause problems with your schedules, I would just remind you that even if you don't have a conscience, really successful businesses don't get that way by killing off their customers!

    If I am talking to you, I hope you will take a few minutes and really think about this…

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    • Dori

      Mar 16, 10:17 AM

      It's too bad that we don't run dialysis organizations, Mel. I do believe that CMS is at least pushing the renal community to keep people at to use a standard of 10. Data shmata, apparently. I have to believe that if CMS chose to pay for dialysis BY THE HOUR, a lot of folks would be getting longer, gentler, SAFER treatments.

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      • Mel Hodge

        Mar 18, 6:01 PM

        CMS payment by the HOUR rather than by the TREATMENT is a great idea. It would align the best interests of patients and dialysis providers which have too long been in opposition... and the patient the loser in an unequal struggle. Has this been put forward as a serious proposal to CMS or Congress?

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        • Dori

          Mar 18, 8:39 PM

          Not that I'm aware of, Mel. Paying by the hour would align the incentives, fit the data, and improve outcomes. I've mentioned it to some CMS contacts, but no one who has the authority to make that change. It would make an interesting demo project. We have seen how nephrology follows the money. Why not spend the dollars where they could do some good?

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      • Dori

        Mar 16, 10:18 AM

        Oops, I meant to say that CMS is pushing the renal community to keep people to less than 13, not 10. They should use 10...

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        • Henry P Snicklesnorter

          Mar 18, 7:29 AM

          ..... and I and others who are far better informed and qualified than I am, would say they should use 5 .... :)

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          • Dori

            Mar 18, 10:21 AM

            Yes, indeed!

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