Hi, everyone! My mom has been on dialysis for about two years now, but she just started at a new clinic (DaVita) in Virginia.
My mom suffers from very low blood pressure during and after treatment, so we’ve found that a slower, more gentle, and longer (4 hour) treatment works best for her. When she started at DaVita, we learned that almost everyone there (with the exception of one other patient) only receives 3.5 hours of treatment. My mom asked for 4 hours at a slower rate, in line with the treatment she has been receiving for the past two years, and they obliged. We thought everything was settled.
However, one of the nurses decided that my mom only needs 3.5 hours because her URR is very good. She has approached my mom several times about shortening her treatment, and every time my mom has told the nurse that she doesn’t want to do that. Recently, the nurse told the doctor that my mom’s treatment time should be reduced, so my mom explained to the doctor why she preferred the gentler 4-hour treatment. The doctor told the nurse that my mom doesn’t want to shorten her time. Again, we thought the matter was settled…until today, when the nurse deliberately changed the timer on my mom’s machine to 3.5 hours without telling her. Luckily, my mom noticed that the timer had been changed, and her assigned tech changed it back to 4 hours.
This nurse has made it clear that she doesn’t want anyone questioning her (she has yelled at and talked over patients that ask questions), and she is also known for treating non-white patients worse than others. Unfortunately, she also seems to have a lot of sway over the clinic manager and doctors. My mom’s tech has already told us that the nurse doesn’t like my mom and has made comments like, “She should go back to [old clinic].” My mom is worried that speaking up will result in retaliation against her, and we don’t have much faith in the clinic manager (she has her “favorites” and my mom isn’t one of them, since my mom has a tendency to ask questions before accepting a new medication and wants to be kept in the loop about her treatment plan).
What other options do we have other than switching to another clinic, which will take some time? Is there something else we can do to address this issue if the doctor and/or clinic manager don’t take action?
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First, I’m sorry to hear about all of this. Second, these are for profit clinics. Shortened dialysis time leads to more patients filling the chairs and more profit. Thus, the nurses who run these centers are “encouraged” to standardized rather than customize patient care.
Where does your mom’s doctor actually stand on her treatment protocol? Does the doctor believe she needs the slower and gentler treatment protocol or not? If not, the doctor won’t be strongly behind prescribing it. He may say your mother doesn’t want the shortened time but not say that she needs the longer time..,
Of course your mom could try in home dialysis. She could move to another center, etc. Is there a patient advocacy person at this center? If so that person might be able to help.
Finally, I’ve been somewhat shocked to learn how much treatment decisions at dialysis centers are dictated by the nurses rather than the doctors.
Keep us posted. I know others share experiences similar to your mom’s.
Thank you for your advice! Even though she’s been on dialysis for two years, nobody has really told us anything about how everything works—we’ve had to learn a lot on our own and still feel lost at times.
I’ll be sure to tell my mom that she needs to have a clear conversation with her doctor. I’m not sure if the doctor conveyed that my mom “needs” versus “wants” 4 hours to the nurse, but I do know that the Plan of Care we recently received from the clinic states that her prescribed treatment time is 4 hours.
We’ll likely transfer to a new clinic, but I hate having to send my mom to a place where she feels unsafe in the meantime. Dialysis is hard enough…it’s a shame that patients can’t even trust that clinic staff will have their best interests at heart.
If the treatment plan clearly states 4 hours I’d think you could take formal action against the nurse. Of course that may create an uncomfortable situation for your mom. However, I’d suspect others in this center are nit receiving their prescribed treatments as well so this could help many in addition to your mom.
My mom is going to discuss what happened with her doctor and reaffirm that she needs 4 hours. Hopefully that will put an end to the issue and call attention to what this nurse is doing when the doctor isn’t watching.
Thank you! We also found this textbook very helpful: Review of Hemodialysis for Nurses and Dialysis Personnel by Judith Z. Kallenbach. It goes over common medications and problems, machine monitoring, and how to analyze and interpret lab results, among other things.
Yes, There should be posted somewhere in the clinic a Patient Rights and who to complain to.It is a requirement of CMS. If not, ask for it in a manner that is not threatening..... like saying you want to see the chain of command ...... or if you are really worried, tell them you want to send a compliment. However, retaliation is illegal when you report mistreatment.... on paper. Also check th Davita site to see if there is any info on who to contact.
Where is the Medical Director in all this. It is up to them to make the prescription and if it reads 4 hours at 300 speed, (lets say) and the nurse is not following the prescription than that is malpractice, and she should be removed. Nurses NEVER should change prescribed doctor's orders unless they are NPs.
Thank you for your advice! I did see that the clinic has contact information posted for the ESRD Network that serves our state, but we weren’t sure about how they handle complaints. Do you know if they simply report back to the clinic manager, or do they go higher?
My mom’s Plan of Care states that her prescribed treatment time is 4 hours. She received that draft in mid-December, and two days later she had the discussion with the doctor about not wanting to shorten her time. We were told she would receive an updated Plan of Care every 3 months. Is it possible that they could have changed the treatment plan without telling my mom? She thought she made it very clear to the doctor why she needed a longer treatment time (she has tried a faster, shorter treatment time before and gotten very sick), but the doctor didn’t really agree or disagree—she just turned back to the nurse and told her that my mom doesn’t want 3.5 hours. Would we be able to go above her doctor to the Medical Director if this doesn’t get resolved?
So an official complaint to the State ESRD has to be answered within a certain amount of time with copies of the complaint to you and to whomever, usually higher than a Charge Nurse, usually ..and has to be answered and addressed to the satisfaction of the complainant. Is her doctor aware they changed the plan care and yes, the care plan is supposed to be brought to your mother and anyone else who is signed off as a care giver.
Thank you for explaining how the ESRD Network works. We’ll look into filing a complaint if the clinic doesn’t resolve the issue.
We received my mom’s latest Plan of Care (that shows a prescribed treatment time of 4 hours) in mid-December. Two days after we received the Plan of Care, the doctor told the nurse that my mom doesn’t want 3.5 hours; the nurse changed the time on my mom’s machine the following Friday (nine days later). No one informed us of any changes to her Plan of Care since handing us a copy in mid-December. All of this took place over a span of two weeks.
Would the clinic be obligated to tell us about any changes they make before the new Plan of Care is distributed three months later, or would we have to wait until we receive the new copy to find out? This is the first time we’ve run into this problem, and we’re not sure what our rights are. The patient advocate/social worker is rarely there, and he doesn’t like to get involved in non-insurance/financial aid issues…
I’d expect you’d be informed either before or as the change in treatment is prescribed. Thus change would have to be prescribed by a physician, not a nurse.
I can’t recall if she received it yet or not…I’ll be sure to ask her. Is there information in there on how to file a complaint with CMS?
We were going to approach the ESRD Network if the clinic doesn’t resolve the issue, but we’ll keep CMS in mind as well. She usually fills out those surveys they send around about how satisfied she is with her clinic, but we haven’t received one since she switched to DaVita. She’s only been at this new clinic for two months.
If there is a social worker at your mom's clinic I would recommend talking to them and getting them on board with the longer treatment time. Hopefully the social worker has a lot of sway over the doctors and nurses as well.
Social work has nothing to do with the prescription. This nurse is not following the prescription which is malpractice, and she should be reported. This is very serious. What is something happening and your mother, just saying, has an issue medically. This is why it needs to be reported.
There's a Plan of Care? I've never seen one. I'll ask my social worker. So far there's been no issues and unless I want to drive an hour one way to another center I hope it stays that way.
Yes everyone has a Plan of Care. And it has to be signed off by the attending Nephrologist. It is to be followed to the letter. You might do better to ask the nurse for yours.
Definitely ask for it! We found out that it contains a lot of useful information…not just short- and long-term goals, but the mix for the dialysate bath (this was especially important for us, because my mom has to watch how much calcium and potassium are in the mix due to other medications), ultrafiltration rate, blood pressure readings, and treatment times for each visit. We also found out that they hadn’t recorded any of the medications my mom was taking at home, including one drug that would have negated the effects of a drug they were trying to give her in-center.
We learned pretty early on that patients need to advocate for themselves. Never take for granted that the staff are doing what’s best for your health—while many nurses, techs, and doctors have good intentions, things can easily be overlooked due to juggling so many patient files. There are some who hate being questioned; however, we’ve found that most staff members appreciate the fact that we take the time to look over her lab results and ask how we can help keep things in check at home when the numbers aren’t within range, how certain medications work, etc. Finding the best individualized treatment plan should be a team effort. 😊
I asked for mine and was told it was 28 pages and was printing as I was leaving. Found out they had a meeting about it recently but sure as hell no one invited me. I'll get it on Thur or I'll certainly throw a fit.
I did find out the Social Worker was there as part of the review group. And there was a paper I was to sign but no plan until I asked for it. There are a couple of people I talk to that have been there a while so I'll ask them if they get a Care Plan.
It bothers me they do stuff while not deliberately in the dark but if I don't ask or say something I don't get told before hand. I had to stop them a couple of times from taking off fluid as I don't need it. I don't think the nurse I have now really likes me telling her I want to see the screen and to raise the temp.
I am a PFR (Patient Facility Representative) with the IPRO ESRD Network of New England. The chain of command is to fill out a grievance report to your facility or clinic Director and put it in the Grievance box in the lobby. If your nurse goes against your treatment plan of care, that is a legitimate grievance. If it is not resolved at the clinic level, then you can call the ESRD network for your area to investigate and speak to the clinic director . The phone number should be on the poster in the lobby. The ESRD Networks report directly to CMS. I hope your mother doesn't have to transfer to another new clinic, but this one sounds like it has a hostile atmosphere and it might be best to do that. Good luck to you both!
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