Is Davita INSANE?

Discussions for Patients, Family, and Friends HD For Patients
1

It was another wonderful and inspiring day at Davita Home Dialysis. I can honestly say, “What a bunch of clowns.” I am training for my fistula. The Medical Director of the clinic said I was only supposed to run at a blood flow of 250, no wonder I clotted with a perfectly good stick. Anyway, our kind and caring Nurse accused yours truly of turning in false flowsheets. I told him I only turned them in that way because of the lies I was told about starting Extended treatments during only the past 4 and half years, and I was happy to finally have his attention. Our generous Nurse claimed that did not have anything to do with flowsheets. I responded, “Does it feel good when people lie to you?” I asked him why it was ok for them to lie about extended treatments and a major felony for me to lie on flowsheets, he claimed that the issues were not related. “That is a bunch of crap” I told him. He told me that he was going to have a meeting with the clinical nurse manager and the Nephrologist. I told him, “Good for you, I will not be there.” He threatened that he would make me bring all of this stuff to the clinic from my house, a 45 minute drive. I told him, “Cannot afford the gas and I am not going to do it.” He threatened to kick me out of the home program, I told him I would go to Hospice and he would have to find someone else to abuse. Then, after the treatment was completed, I dropped one of the needles on the floor, in the clinic for the first time and the clinical nurse manager said to me, “Is that the way your house looks at home?” Then, I remember being told only to drink a certain amount of fluid. I asked why that certain amount and the Nurse screamed at me, “BECAUSE YOU ARE A DIAYSIS PATIENT!!!”

This is just a small example of the obnoxious behavior of Nurse to patient. Believe it or not, Davia needs establish reasonable adult rules of contact from Nurse to patient.

2

It sounds like you were having a bad day that only got worse. Since all you can control is you…Was there anything you could have said or done that would have avoided turning the interaction(s) with the nurse (and possibly the doctor) into a war of words. For example, so far as the instruction about what your blood flow rate should be, could you have asked the doctor to explain why he recommended that speed which were concerned was slow enough that your blood might clot? How would your doctor have reacted if you’d offered to look up information on the NxStage website about usual blood flow rates to share with him/her? The goal is to have adult-to-adult discussions instead of triggering a defensive response that leads staff to assume a “parental” role where staff “talk down” to you which likely triggers more anger in you. This can easily become a negative pattern of communication.

I can understand how much you want to do extended time dialysis. But I believe NxStage is still doing studies of extended time dialysis with their machine to prove to the FDA that it can be used safely. Until the FDA gives the green light, other clinics can’t use the NxStage machine for extended time dialysis. I bet your clinic (like others) thought the FDA would move faster than it has. I don’t believe they intentionally lied to you. One option you have is to find out where extended time dialysis is offered and call to see if you could get on that treatment if you transfer.

So far as falsifying flowsheets, please don’t ever do this because:

  1. It prevents the clinic from identifying and correcting problems with your dialysis prescription, medications, etc.;
  2. It may lead to billing errors that could backfire not onlyl on your clinic but on you;
  3. Most importantly, it opens the door for the home training nurse and doctor to not trust you. Trust is essential with home dialysis, even more than with in-center dialysis because patients are not seen as often and there is already concern that some patients who are not followed closely may not follow their treatment plan. Without trust, the doctor may refuse to treat you or the clinic may refuse to allow you to continue to do home dialysis (as the nurse threatened), and you would need to go in-center, to transfer to another clinic, to switch to another type of treatment, or stop dialysis (which you threatened back).

I hope that you and your home training nurse can patch things up and move on. However, if the relationship is too damaged, perhaps you should look for other options of dialysis facilities where you can get the treatment you want to do. Keep in mind that as much as we wish this was different, every clinic does not have to offer every treatment or every home HD machine.

3

I’ve actually been in contact with someone in the medical devices unit at the FDA; I asked about their position on using NxStage for extended dialysis, and they didn’t know what I was talking about. As time goes on, I suspect that some clinics are using the “The FDA hasn’t given their approval” strategy for denying extended home dialysis while the FDA isn’t even investigating this issue. They have told me that it is up to the nephrologist to prescribe dialysis doses. Just sayin’.

4

[QUOTE=Beth Witten MSW ACSW;20800]3) Most importantly, it opens the door for the home training nurse and doctor to not trust you. Trust is essential with home dialysis, even more than with in-center dialysis because patients are not seen as often and there is already concern that some patients who are not followed closely may not follow their treatment plan. Without trust, the doctor may refuse to treat you or the clinic may refuse to allow you to continue to do home dialysis (as the nurse threatened), and you would need to go in-center, to transfer to another clinic, to switch to another type of treatment, or stop dialysis (which you threatened back).

[/QUOTE]

Plus, this can backfire for every potential NxStage user because clinics that don’t understand, don’t want to know, or simply don’t care to offer it will use any ‘reason’ to continue not offering it. Using ‘too many patients don’t comply’ could be a valid growing ‘excuse’ amongst clinics.

5

The FDA is in the process of evaluating an application to use the NxStage System One for nocturnal (extended hours) dialysis. I’m not sure whom you spoke to, MooseMom, but the FDA is a large organization, so even getting to the right division doesn’t mean that you reached someone who had a clue.

NxStage went for this new “indication” for the machine for marketing, NOT safety purposes. They cannot advertise the machine for nocturnal use unless it is FDA-approved for that use. But once a machine is on the market, an MD can prescribe it for ANY purpose. The large providers are choosing to hold back on offering nocturnal HD because they have deep pockets. A lot is at stake if someone doing nocturnal has a problem and they are sued because of the “off-label” use of the machine. That’s the only reason they’re waiting. Once the FDA does approve this use (and I fervently hope it is soon!), I think we’ll see rapid growth in nocturnal.

6

Thanks for that, Dori. The FDA doesn’t make it easy to be in contact with a human life form, so I do realize that the earthling that did contact me wasn’t necessarily “in the know”. But I found it interesting that even though she was in the medical devices dept and had access to their database, she still didn’t even understand my question. I can understand clinics not wanting to be responsible for any problems encountered by “off label” use, but it still infuriates me that, if what you say is true, this is a marketing issue and not a patient-centered issue. It’s just one more way in which a chronically ill person has one more ounce of control snatched away, one more way in which “Empower the patient” is not a clarion call but is, rather, a vocal mirage.

7

It is tremendously frustrating that what Dr. Agar and I consider to be the form of treatment that is closest to transplant is being limited for legal reasons. (Remember that nocturnal HD was done in the US in the 1960s! It’s 50 years old!). Smaller clinics and providers are offering “extended hours” treatments with the NxStage machine as an off-label therapy. But no-one with as much to lose as DaVita and Fresenius are going to risk this until the FDA approves it.

8

Well, my clinic is small and is not affiliated with either of the big two, so I’ll get mine and will just have to leave the insanity to others. But, we’ll still keep working for the benefit of everyone. We sure don’t want to tear a whole in anyone’s big pockets.

9

Dori,
I totally agree… Even though NxStage is approved for home use, Davita and other centers refuse to provide it for off-label nocturnal use. In my opinion, one reason is that the nephrologists just do not want to deal with the red tape of the Administration and paper work to use it off-label. They do not want the hastle and extra work.
///MM

10

I know patients from a local DCI clinic who are doing nocturnal dialysis using the Fresenius machine that is used in-center. That machine requires more set up in the way of home modifications than the NxStage machine so it’s not as convenient. However, patients have told me they feel great and their dietitian says that they can pretty much eat a normal diet and may even have to supplement phosphorus. In the Kansas City area, Fresenius, DaVita and DSI clinics each have nocturnals shift 3 nights a week. Medicare Part B pays for all 3 treatments without any medical justification. Staff and patients say those patients are doing well. Perhaps you can check to see if any of these options work for you until NxStage gets the FDA approval NxStage and some of these other dialysis providers are waiting for.

11

Interestingly, NO machine is FDA-approved for nocturnal. So, from a legal perspective, it doesn’t make any more sense to let people use a 2008K (even the @Home model) than a NxStage machine. From a cost perspective, it may be a toss-up. The 2008K requires separate water treatment and plumbing/wiring work in the home, but the NxStage needs a separate heparin pump, which can be pricey…

12

I think a group of people are LYING. What a terrible concept.

13

Empowering the patient or consumer is a joke.

14

What is this, the county, state, or Federal prison system?

15

No, we would never want anything that was good and would help the patient.

16

Cynical much? :wink: I don’t think empowerment is a joke, and don’t think anyone lied. But, you’re entitled to your opinion.

17

[QUOTE=Beth Witten MSW ACSW;20800]It sounds like you were having a bad day that only got worse. Since all you can control is you…Was there anything you could have said or done that would have avoided turning the interaction(s) with the nurse (and possibly the doctor) into a war of words. For example, so far as the instruction about what your blood flow rate should be, could you have asked the doctor to explain why he recommended that speed which were concerned was slow enough that your blood might clot? How would your doctor have reacted if you’d offered to look up information on the NxStage website about usual blood flow rates to share with him/her? The goal is to have adult-to-adult discussions instead of triggering a defensive response that leads staff to assume a “parental” role where staff “talk down” to you which likely triggers more anger in you. This can easily become a negative pattern of communication.

I can understand how much you want to do extended time dialysis. But I believe NxStage is still doing studies of extended time dialysis with their machine to prove to the FDA that it can be used safely. Until the FDA gives the green light, other clinics can’t use the NxStage machine for extended time dialysis. I bet your clinic (like others) thought the FDA would move faster than it has. I don’t believe they intentionally lied to you. One option you have is to find out where extended time dialysis is offered and call to see if you could get on that treatment if you transfer.

So far as falsifying flowsheets, please don’t ever do this because:

  1. It prevents the clinic from identifying and correcting problems with your dialysis prescription, medications, etc.;
  2. It may lead to billing errors that could backfire not onlyl on your clinic but on you;
  3. Most importantly, it opens the door for the home training nurse and doctor to not trust you. Trust is essential with home dialysis, even more than with in-center dialysis because patients are not seen as often and there is already concern that some patients who are not followed closely may not follow their treatment plan. Without trust, the doctor may refuse to treat you or the clinic may refuse to allow you to continue to do home dialysis (as the nurse threatened), and you would need to go in-center, to transfer to another clinic, to switch to another type of treatment, or stop dialysis (which you threatened back).

I hope that you and your home training nurse can patch things up and move on. However, if the relationship is too damaged, perhaps you should look for other options of dialysis facilities where you can get the treatment you want to do. Keep in mind that as much as we wish this was different, every clinic does not have to offer every treatment or every home HD machine.[/QUOTE]

First, I have complained to the Nephrologist about this obnoxious behavior, it is also communications and actions that they have started. If you have ever seen the movie “Full Metal Jacket” and Gunnery Sarg Hartman, you will see their attitudes. I seriously doubt you would allow someone to talk to you in this lifetime, in that fashion. The problem for them, is that I have known the Nephrologist for 10 years, six years before I ever knew or saw them. The Nephrologist and I talk like adults, not like idiots, as they do. Home Dialysis have certain obligations to the consumer. Legal, I hate to explain to you that you can sue for what ever you feel is warranted, does not mean you are going to win anything, judgement or otherwise. In this part of the Midwest, juries are very, very cheap, know many attorneys and a partner in a 300+ plus attorney firm. Many things and crimes are extremely difficult to prove in a court of law, many felony crimes go unsolved, each and every year. It is essential for me to be able to trust them, trust is a two way, not a one way back alley street. As the Nephrologist will tell you, I do not respond well to threats. When I give the Nephrologist a very valid reason something was not done, he does not see a problem, not unlike Gunnery Sarge Hartman, who wants to bark and complain, along with acting like everything is some kind of National Emergency. I have seen Armed Robbery, Murder, People bleeding and dying in the streets, parents beating their children, neglecting their children, people dying alone, and I have almost met my maker. If you think Gunnery Sarge Nurse scares me, anyone who believes that is out of their mind. I do not take abuse from ANYONE, regardless of position or title. I am very gentle and compassionate. However, I do not take trash or abuse. If you want to talk crazy, go somewhere else, because I will not listen. My God, it is amazing to me that people in the centers take this crap, unreal. Now, you know why I left, I guess the Drill Sarge wanted to follow me, LOL! He will not enjoy having his teeth smashed out with a PR-24(nightstick). I am happy to do anything you ask of me in a reasonable adult fashion, have a nice day. :slight_smile:

18

I probably don’t really have to say this, but, well, I will. Dori and Beth, I am so very grateful for the work that you do on the behalf of patients, and I truly do not mean to be condescending, but I am not sure it is possible for you to imagine how frustrating it is to have your life in the hands of people you do not trust and to know that you are not getting the best treatment for your deadly, incurable disease because your clinic doesn’t “offer” it. You have a disease you did not ask for, and you are having to subject yourself to a treatment that keeps you alive yet can still slowly kill you, yet the best treatment is not available because you just happen to live in the wrong zipcode or some executive you’ll never meet decides that making money off your misfortune is a better result than you getting optimal dialysis. Your body is being assaulted for no reason other than the staff can’t be arsed. Can you close your eyes and imagine how truly terrifying that is?

We keep being told that we need to be our best advocates, that we need to empower ourselves and take control of our treatments and our health. On a wider scale, all around us we are seeing public services being slashed and disadvantaged people being swept under the rug, all in the name of “personal responsibility”, yet when we patients try to self-advocate, empower ourselves, take control and exercise “personal responsibility”, we’re really being told that we cannot possibly be trusted and must be nannied into submission. It can be the most frustrating, dehumanizing experience. If you get great staff, you are blessed, but if just ONE tech or nurse or SW or manager makes life difficult for you, you are so totally toast.

In an ideal world, dialysis clinics would be havens of pleasure, but everyone is stressed. The staff get to go home at night and eat their baked potatoes and swig their cola and have chocolate ice cream for dessert and forget about kidneys for a while, but we patients can’t do that. Please don’t expect us to always be grateful for the life-saving treatment we are getting because dialysis is horrible and frightening and it sears your very soul.

NDXUFan, I really do hope that you can get things worked out and that you can find a clinic who will be merciful and will kindly offer you optimal treatment. It is not for me to ask, but I will anyway…please do try to be patient if at all possible. Life is hard enough without having to fight people, so please try not to create a battlefield. Hopefully we will hear from NxStage and the FDA soon about approval of NHD. I wish you all the luck in the world.

19

I just wanted to add…have any of you listened to the Kidney Talk podcast with guest Toni Bernhard? In case you haven’t, Ms Bernhard used to have a private practice in which she taught Buddhist ways of coping with stress, etc. She became ill with the flu while holidaying with her husband in Paris; it was a once in a lifetime trip that was ruined. She never recovered, and her initial illness was nine years ago. Basically, she has had the flu for nine years. Can you imagine? It seems that her immune system, activated and symptomatic by the virus, never switched off. Isn’t that incredible? She understandably became very depressed and was unable to practice what she had preached. Instead of being able to use the coping mechanisms founded in Buddhism that she taught to her clients, she forgot all of those lessons. Fortunately, after three years of this anguish, she was able to incorporate those lessons into her life to help her deal with her situation, and she has written a book, “How to be Sick” which I’ve downloaded onto my Nook and am eager to read.

I mention this because even though professional people work in clinics and usually do their best to help ESRD patients cope, until you have been there and have had your very survival threatened by this very cruel disease, it might be worthwhile to remind yourselves from time to time that ESRD is probably the worst thing that has ever happened to us and most likely will ever be. If I have offended any of you who are not on dialysis yet work tirelessly to help us get the optimal treatment we need and deserve yet often do not get for reasons that are extremely frustrating, my deepest apologies. I don’t want this to turn into a “You’re not on D, so your views don’t count.” kind of discussion because that is unfair, but I do just want to remind you that we’re talking about that most primal of instincts, survival.

20

Dori, I think there is a serious disconnect between what they say and what they do in reality.