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.
Comments
Juliejones.mega4@gmail.com Jones
Jan 06, 2023 6:25 AM
Finally hearing truth !
I am a hemodialysis patient and had several heart attacks last summer.
I listen to John Agar lecter from Melbourne Australia and was OH WOW
New Zealand where I live and have hemodialysis doesn't promote long slow dialiaysis, neither do they provide in-house over nite dialysis like Azy and Canada.
I have talked to many dialiaysis staff and they deny or make excuses why they do not make big of it.
Told me I spent too much time on the internet.
Don't get me wrong they are really lovely but more than likely controlled by the health department which not long ago were going to reintroduce NO DAILYSIS FOR DIABETES OR THOSE OVER 60 OR 65, can't remember sorry.
Because a few decades ago IT WAS HOW THINGS ROLLED until they were taken to court for discrimination....so likey money...time is not generous...in-house the other day I saw a young woman's UF rate AT 8 YES 8 when over 5 is not recommended or your heart is actually being ELECTROCUTED.
Refer to John Agars lectors on UTube.
The state I see alot of patients I.e victims after DAILYSIS is heart breaking I leave howling someday I'm sooo sad they are not aware.
I contacted the kidney foundation who pretty well brushed it off..they said we have no evidence long slow is better ...only have to look across the ditch and evidence is there
I really pray NZ will follow our neighbors stand on this and STOP CAUSING LACK OF QUALITY OF LIFE AND A MUCH SHORTER LIFE
Bless you all please help get this instituted and save lives love and blessings.
When I get strong again if nothings changing I'll likely take the health board to court for discrimination as I pain seeing the suffering.
My bodies been trashed as fluid wasnt apparent it was intercellular and my heart and body struggle with UF over 4 so I've had 5 sessions over 4 and I'm trashed
Lisa Cook
Dec 20, 2022 3:18 AM
Karen K Walker
Dec 20, 2022 3:10 AM
My biggest concern is that HHD doses not work out, we loss our 3 hour round trip and the next closest center is 5 hour round trip.
What are the percentage of people that try HHD and go back to a center?
Diana Maloney
Dec 19, 2022 6:33 PM
He likes that medical people check his bloodwork regularly and are present should he need them. We have considered home dialysis and would consider it again if there is evidence that it is a better route to go meaning how it would enhance his life and longevity. I was under the impression that the actual treatment time is the same (3 1/2 to 4 hours).
KIM HAMMOND-BEYER
Feb 14, 2023 12:03 PM
It’s not super easy. Peritoneal dialysis is much easier and more convenient. But I have a history of pancreatitis and lupus ascitis, so not an option for me.
We had great training in center. Luckily I don’t have any problem with needles and started self cannulation from first training day. My husband is very competent and doesn’t freak at blood. There are many steps, but they are all easy. Sometimes especially in the beginning we had issues, forgetting to open a clamp, forgetting to close a clamp (looked like a murder scene in my room!, etc but the machine tells you about everything and mine has an iPad to observe throughout session. A partner does have to be there and be ok with blood. No one has to be with you for peritoneal.
Bottom line, home hemo rocks. I almost feel like a normal person.