The Risky Concept of Incremental HD in the US

Working my way through college as a nursing assistant, I remember learning the “3 H’s” of a good enema: “High, hot, and a helluva lot.” Luckily for me, I never did have to give one. But, those 3 H’s seem like an unfortunately good fit for most US hemodialysis:

• High rates of ultrafiltration that cause organ stunning
• Hot (well, warm) dialysate—when it turns out that lowering the temp by ½° C below core body temperature can save lives¹
• A helluva lot of rhetoric, data collection, and policy focused on numbers—not on the well-being of the people receiving the treatments

A new article about incremental HD² points out that while we routinely measure residual kidney function in people who do PD (or, at least we are supposed to), this is not routine practice in HD. This reminded me of the recent study by Zhang et al³ that looked at residual kidney function with two HD treatments per week vs. three. Among 85 people initiating dialysis, 55 were given standard 3x/week treatments, while the rest had two treatments per week for 6+ months. Clinical outcomes were similar, but the twice weekly HD group kept significantly more kidney function, especially in the first year—and more residual kidney function predicts longer survival.⁴

When this study came out, I was appalled. Suggesting less HD when most Americans on dialysis already receive more than 10% fewer minutes (214)⁵ than the 240 DOPPS data suggest as a minimum—and subsequently die at the highest rate of any civilized country—seemed like a very bad idea. What a sad commentary it is on “life-saving” US dialysis that getting less of it (at least at the start) may save lives!

Imagine that you are just starting dialysis and don’t yet know what to expect. You are told you will feel better “in a few weeks.” But, you may not feel better. In fact, you may feel much, much worse. Maybe your experiences with dialysis in others were even bad enough that you would choose not to dialyze at all, as this person might:

“When my mom was on dialysis, she would cramp horribly and pass out from her blood pressure dropping almost every treatment. My best friend just passed away last month, she was on dialysis for 8 years. She told me countless times, ‘if I knew what I know now I would have never started dialysis.’ The last 6 weeks she was alive we were in the hospital 9 times. They would pull her too dry at dialysis, her BP would drop to like 70/40 and she would black out, we would go to the hospital, they would pump her full of fluids and send us home. It was very frustrating because we tried to have them adjust her dry weight at dialysis since she had been on steroids, but they would not listen. My eGFR is 18%, I am 34, and not a candidate for a transplant. I have seen firsthand how hard dialysis is on your body and if I had to make a decision today on whether I wanted to start dialysis or not I wouldn't start. I have a hard time accepting that at 34 I would be agreeing to live on a machine 3 days a week for the rest of my life.”

It has long seemed to me—based on thousands of anecdotal reports like this one over a 26-year career in this field—that what we tend to do is deliver a one-size-fits-all treatment that assumes no residual kidney function, even at the start of treatment. So…we pull water that isn’t there and trigger migraines, painful muscle cramps, and multi-hour recovery times. We make it impossible for far too many people who do standard in-center HD to have any sort of quality of life. Is it any wonder, then, that withdrawing from dialysis is a leading cause of death? Also concerning are the data that show that starting dialysis is especially lethal. The first few months of treatment are fraught with danger, with mortality rates twice as high as they are later.⁶

Why do people choose to dialyze when their kidneys fail? To live, of course, but not just to exist for the sake of dialysis. Two metaanalyses have tried to shed light on dialysis decision-making. One looked at 16 studies.⁷ Beyond the obvious—not starting treatment would lead to death—minimizing the intrusiveness of dialysis on quality of life, autonomy, values, and sense of self was key, along with knowledge and support. An analysis of 40 studies⁸ found that what mattered most were: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control, (4) personal importance on benefits and risks.

Personal control, values, and maintaining normality clearly matter to people on dialysis. And, we know that large numbers of Americans stop dialysis each year and choose to die. (Imagine that happening in the 1960s.) So, why DO so many people stop dialysis? Perhaps because they are miserable on standard in-center HD? Interestingly, I couldn't find a single study on this topic since the 1990s (readers, feel free to point me to them if you do)—but besides age, comorbidities, lack of social support, and pain, another commonalty appears: “severe limitation of activities of daily living”.⁹ “Dissatisfaction with life”.¹⁰ “Spent less time outdoors”.¹¹ Lives that don’t look the way people want them to, I would say.

Rather than offering two incremental “Bazooka” dialysis treatments per week to people starting out—why don’t we offer slower, gentler treatments tailored to people’s actual ultrafiltration needs? With better dialysis we really could save more lives.