The Truth About Home Dialysis Time
I have a heartfelt request to make to dialysis providers. Please stop giving patients incorrect information about the logistical burdens of home dialysis. It is not fair to paint a glowing picture, and with that, to impart unrealistic expectations. It takes a lot of work to un-do misconceptions about what “living well on dialysis” looks like, and “living well on dialysis” is a time-intensive process regardless of the modality selected.
Half-truths are shockingly similar to lies. It’s not kind to lie to sick people. Patients often need to understand a lot of things all at once, and that is described almost universally as an extremely overwhelming experience. Confusing the very people at the center of our care can have devastating consequences for them, both psychologically and physically. We can promote home dialysis without selling patients a pipe-dream that is ultimately not grounded in reality. We can give hope for a better life without glossing over the parts of that conversation that are unpleasant.
We have an obligation to be honest about the work that is involved from the get-go to have our patients successfully achieve their goals. Here is the truth about time, and it is what we should be saying a lot more often—good treatment takes time.
As a quick re-cap, the kidneys spend 168 hours per week maintaining homeostasis. They filter A LOT of blood when working properly: about 200 liters per day. Really think about that number next time you’re in the soda aisle at the market. It is enormous! We cannot easily treat that loss of function without sacrificing something along the way. That “something” is often the parts of life that are still worth living for our patients, and we all need to be mindful of that fact.
One of the most under-rated numbers in hemodialysis is the blood liters processed (BLP). So many people record that number without thinking about how profound of a sum this really is. A liter is a liter, whether we are measuring blood or root beer. With a pair of healthy kidneys clocking 1400L of filtration every week, how much can really be “replicated” with treatment?
Well, by figures alone, if we ran a (conservative by American standards) treatment at a 300mL/min Blood Flow Rate (BFR) we would need to run about 11 hours to come close to processing the volume that kidneys do naturally in one day.
For those who are dependent on HD; good thing we really only NEED one functioning kidney to live, right? For the sake of this discussion, let us lower our expectations, and assume we’re only looking for 100 BLP per day to “replace” the filtration function of one kidney. A BLP of 700L per week is certainly more reasonable-sounding.
In-center HD (ICHD) is notoriously hard on the cardiovascular system, especially in the United States where the BFR is routinely pushed to 500mL/min to provide timely treatment to as many people as possible. In that setting, you can get 120L of blood processed in 4 hours, at three times a week, but at a cost of overall high mortality and morbidity.
Treatment at these speeds may allow for improved adequacy in less time, but is often coupled with high ultrafiltration rates, which contribute to cramping, hypotension, organ stunning, and a wide variety of rebound symptoms that decrease quality of life. Plus, at best, you’re getting about 360L of blood filtered per week. It’s really not much, and it comes at a great expense.
At home, it is unwise to run treatments this fast, as safety in HHD is largely dependent on reducing the risk for complications as much as possible. Home patients need to be educated about the “time-trade” very early on. Dialysis happens at home for a multitude of reasons, one of which is the ability to use both time and frequency outside of “conventional” standards to customize treatment to the patients’ needs as individuals.
A goal of care is to allow for better treatments, at slower speeds, with less complications, for the sake of having an acceptable life in exchange.
Nothing I have mentioned thus-far even touches on the amount of time HHD patients spend on the set up, take-down, and routine maintenance of their equipment. It does not mention the time spent placing orders, waiting for deliveries, or organizing supplies. It makes no mention of the time they spend trouble-shooting issues, or following up with the clinic or other providers.
Likewise, I’m not touching on the amount of time ICHD patients spend commuting to and from the clinic, waiting on staff, or waiting for transportation. They do spend significantly more time recovering from their treatments than any other modality though—about 8 hours. Longer and more frequent treatments reduce recovery time—which is associated with better survival.
Imagine that you needed to do something that was very labor intensive to keep yourself alive, and feeling like you were doing something “wrong” if you had to do more of it. That would take a toll on you psychologically, wouldn’t it? Envision yourself or your loved one in the shoes of your patients. Consider how refreshing honesty would be about these topics. Think about how much more understanding your patients could have about their treatment plan if we helped them see the task at hand more clearly. How many patients would choose to spend more time on treatment to better enjoy their time off of treatment? Plenty.
The truth about good treatment taking time is indeed a bitter pill to swallow, but we owe it to our patients to creatively explain this concept as many times as necessary to make sure that everyone is working together toward the same objectives. No one wants to need any kind of dialysis, ever.
How much dialysis your patients will ultimately be willing to do depends a lot on how you frame this topic at the beginning of your education. The relationship you need to build with your patients in order to have a successful home program is one of trust and mutual respect. Start on the right foot. Start the conversation with honesty.