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 stunning…3
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.”
- 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↩
- 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↩
- 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/↩
- 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↩