Hi Folks
Can anyone explain the where and how the dialysis protocol came into the process of dialysis?
I understand the lab result , but isn’t part or all of the rest of the dialysis protocol left up to each unit?
So you could have one dialysis unit in city A letting people on dialysis to have more say in the Tx routine, while a unit in the same city only at the other end of the city. That unit says no to the people on dialysis as the amount of input…
thanks
bob o’brien
Hi Bob,
I’m afraid I don’t understand your question about protocol. Exactly what does a “protocol” include, from your perspective?
Hi Folks
Hi Dori
The month to month trips to a center 100 miles away. The iron shots(we talked on this before) we can take the risk to home dialysis but we can’t give iron. The idea that if you choose a home program that the protocol is for 6 tx a wk of either short runs or long night runs. That if a person is feeling burned out and wants to cut back to say three days then the person has to come into a center, instead of just doing three tx at home. Ever since I came into dialysis the answer to any of my question were always answer by ““it’s our protocol and if we let one person do something different then the unit will get into trouble”” And I ask what kind of trouble, they(state inspector) will write us up.
Dori I’ve been seeking some kind of middle ground, but have been met with a stone wall. Folks from the network say just play along. Play along to what? My social worker saying it all boils down to the DR’s and what they think is good for all on dialysis. Which is base on a set age group who may have other health issues(heart lungs). It seem to have no flex as to the more healther person.
thanks
bob obrien
Ohhh. I think you’re just talking about rules in general. Some clinics are moving toward a more fluid definition of home therapies, where folks may mix up some short daily treatments with some long nocturnal ones. But it sounds as if your center has a pretty fixed idea of what is and isn’t okay for a home patient to do.
I feel for you, Bob, not being much of a rule-follower myself. Unfortunately, every clinic develops its own protocols, and they are all different. (We tried really, really hard to get a shareable protocol that we could offer to folks starting up programs to save them time & get more consistency, but no-one would provide one).
More importantly, clinics vary in how patient-centered they are–whether what comes first is YOU and your health, or THEM and their written rules. At this point, if you don’t like your clinics’ rules and talking with the staff doesn’t help, your best bet is to find another clinic that you like better.
Hi Folks
Hi Dori
What brought this up was I going back over the papers given to me and found on a paper that stated that I had signed a ““contract” and part of the contract was that dialysis was a a privilege that could be taken away at any time”" I went to my center on 11/18/08 and talked to them about this at which time no one knew anything about a contract or the ““privilege”” issue. In the time I’ve been in dialysis I have heard staff use the term "“Our company protocol won’t let me do this or do that etc. “”” And I think I’ve seen on this board, different post refer to protocol in the use of iron or how a center in one area will let people to have guest in with the person while on dialysis while others units will not let guest in dialysis area (the unit I’m with now guest can come in into to sit with person, the one before no guest). Or some units let a person on dialysis eat or drink small amount while on dialysis while others no food or drink(the unit I was in let people eat or drink the next center no food or drink).
I want to try and help people not have to go though what I did ,but I need to have a clear understanding of what is law vs rules/privilege.
Thanks
Bob Obrien
In terms of patients’ rights, very, very little is guaranteed in the Medicare Conditions for Coverage, or what you might call “law.” We’ve spelled out the specifics in the “Rights & Responsibilities” module of Kidney School (http://www.kidneyschool.org). The ESRD Network folks were very helpful about reading that module and helping to make sure that we didn’t miss anything.
Most aspects of a protocol or clinic rules are up to the clinic to decide, and as you’ve seen, they can differ quite a bit. They can choose to do contracts and require that you sign one if you want to dialyze there. Personally, I am not at all a fan of the “home dialysis is a privilege we can take away” approach. Since when should better treatment be a privilege, and if they can’t get along with you at home, what makes the centers think that you’d be easier to deal with when you’re there three times a week? I am also not a fan of behavioral contracts, as they seem very controlling, and the exact opposite of a patient-centered approach.
IMHO, dialysis needs to be about helping folks to live as well and as fully as possible, and on their terms as far as is possible. No-one chooses to have kidney failure, and having conflicts with the staff and needing to battle to get your way is linked in research with lower physical and mental functioning–and a higher risk of hospital stays and death. Research also supports that the more autonomy (control) people can have over their lives, the better they will take care of their health problems, and the better they will do. A controlling, contract-based approach is the exact opposite of what’s best for patients.
From what I’ve seen, some clinics do an excellent job of being patient-centered. Rubin in NY, the University of Indiana, and Northwest Kidney Centers in Seattle come to mind. In large companies, centers can vary quite a bit depending on who runs each one–there are some terrific ones and some that are more controlling. The trick for the next few years is going to be to identify the best practices and spread them so more clinics are doing what works best.
Hi Folks
Hi Dori
The hard part in today world is that people on dialysis can contact other on dialysis. And we can see that there are really good. And there are basic rights that are posted in each center that state each person on dialysis has the right to a list of things. And no where ( that I seen) is it stated that a center can end a program. Unless the person is a real trouble maker. And I don’t mean asking honest questions. So how is a person who wants to help , able to help if the rules /protocol are set on the whim of the people in charge. I have myself very confused on how a such a system can be trusted. I had a case worker from the insurance company look into some of my questions. And after about 2 weeks get back to me and say my questions and the answers are in the legal world. More on this later. My new center thank goodness seems to be willing to have a real give and take on the issues.
thanks
bob obrien
Bob, 19 years ago when I first started working in this field, we used to routinely hear that centers did not want to educate patients, because then “they’d ask questions.” Once the Internet began to be used more, you’re absolutely right that it made it much easier for folks to know that things could be different, even if they didn’t travel to other centers themselves. (I will NEVER forget doing focus groups around the U.S. with various ESRD stakeholders–patients, family members, people with CKD who hadn’t yet started dialysis–and learning that they had no idea that they had choices, or that centers were different from each other.
We ARE making progress. The new Conditions for Coverage now REQUIRE a LOT of patient education (we strongly advocated for this change). The more folks understand, the better they can advocate for themselves. So, that was a key step.