Drill sergeant dialysis center managerI

[Seamus]

I have had a couple of traumatic incidents at my dialysis center.  (Can I specify the name of the facility?)  They centered around a technician who had a dislike for me for reasons known only to God.  On at least two occasions, she purposefully overstated my weight gain by at least seven kilos (i weigh 70 kilos currently), and of course said machine took that amount of weight off me in the three and a half hour period of my dialysis. 

On the first occasion, I wound up in the hospital for a week with pneumonia and had tubes going in and out of every possible orifice.  It took a month to recover.  The second occasion caused me to pass out three times both during and after dialysis.  The director of the facility stated that the technician was "bossy".  I presume Nazi guards at Buchenwald were "bossy", too.

I told the director that I did not want "Susan" to touch me or my dialysis machine again.  The director agreed and permitted me to tilt my recliner and the machine so that I could observe my bp and the amount of weight that they were taking off during the procedure. 

All went well until three weeks ago, when "Susan" wound up on my side of the facility once again.  I panicked and screamed and moaned and groaned until the manager came out to see me.  I expressed my fears that the tech was given a third chance to kill me and she might succeed this time.  She hedged on her promise to keep that tech away from me, and I demanded a transfer to another nearby facility. 

Things were going well at the new facility until late last week.  The manager came out with a new policy that prohibited the tilting of machines so that the patient could observe the bp and other numbers.  As I was the only one who asked for this, guess who the policy was aimed at?  Any ideas how to cope?

[jbeany]

A long handled mirror and learning to read numbers backwards! 

If they aren't letting you check their numbers, then they are the ones being unreasonable.  You have a right to be informed about your treatment.  They should have a patient rights poster up somewhere, or it should have been in the stack of papers you were given when you transferred.  It might help to point out that section to them.

And if they refuse to angle the machine, then insist they angle your chair....  or try insisting that they set the machine profile before you are seated.

[greg10]

Welcome to the forum Seamus 

At your age, I think you were very lucky to survive a one time excess fluid removal over about 3 hours of >5 liters of fluid.  I can't fathom how a trained tech would do something like that.  Please see my signature below to see the safe limit to fluid removal.

For a 70 kg person like you, the maximum fluid removal rate is about 700 ml per hour, with your age, perhaps the limit should be about 365 ml per hour.  My experience with a national chain clinic such as Davita is that they don't know this number and do not have the safety protocol to prevent excessive fluid removal and rate of removal.

I really don't know how to convince the clinic facility administrator to change their protocol or procedure regarding something like this and something as trivial as tilting the machine to let the patient know what is going on.  Perhaps you can bring a hand mirror with you and take a peek at the numbers - but it really shouldn't come down to that.  What we did in our own situation when we got fed up with the national dialysis chain was to switch clinics and eventually do our own hemodialysis at home.

You can screen your local clinics to see how they perform:
http://projects.propublica.org/dialysis/

I have had a couple of traumatic incidents at my dialysis center.  (Can I specify the name of the facility?)  They centered around a technician who had a dislike for me for reasons known only to God.  On at least two occasions, she purposefully overstated my weight gain by at least seven kilos (i weigh 70 kilos currently), and of course said machine took that amount of weight off me in the three and a half hour period of my dialysis. 

On the first occasion, I wound up in the hospital for a week with pneumonia and had tubes going in and out of every possible orifice.  It took a month to recover.  The second occasion caused me to pass out three times both during and after dialysis.  The director of the facility stated that the technician was "bossy".  I presume Nazi guards at Buchenwald were "bossy", too.

I told the director that I did not want "Susan" to touch me or my dialysis machine again.  The director agreed and permitted me to tilt my recliner and the machine so that I could observe my bp and the amount of weight that they were taking off during the procedure. 

All went well until three weeks ago, when "Susan" wound up on my side of the facility once again.  I panicked and screamed and moaned and groaned until the manager came out to see me.  I expressed my fears that the tech was given a third chance to kill me and she might succeed this time.  She hedged on her promise to keep that tech away from me, and I demanded a transfer to another nearby facility. 

Things were going well at the new facility until late last week.  The manager came out with a new policy that prohibited the tilting of machines so that the patient could observe the bp and other numbers.  As I was the only one who asked for this, guess who the policy was aimed at?  Any ideas how to cope?

[Ang]

in my humble opinion its illegal for anyone or company to dictate that you are unable to view the machine or be informed of your treatment.
1. ask the manager for this particicular policy in writing
2.if you can find out from a legal boffin is this illegal or not (me thinks not)
3.if its illegal,advise the manager"anything remotely goes wrong with my treatment-see you in court for medical malpractise.
4. bad publicity usually has fast acting affect

[MooseMom]

Last night, I happened to come across a site for nurses, and it contained a thread called, "I hate dialysis nursing".  (It was dated 2009; if it was a newer thread, you could have bet your sweet bippy that I would have left a comment.)  To be fair, many posters professed their love for their patients, but there were quite a few posts where nurses complained about non-compliant patients.

So, I'm confused.  We patients are told that we must be compliant, take our meds, watch our diets, etc, yet we aren't allowed to look at the screens on the machines that have crucial information about the efficacy of our treatment?  This is so absurd that my brain is about to explode.  If our self-advocacy steps on anyone else's toes, well, it's no longer "self-advocacy", rather, it is just annoying.

My husband is an attorney, so I asked him about this after reading Ang's reply.  He said, broadly, that you should look at the Patients' Rights that should be posted at your clinic and get a copy.  It would be up to a judge to decide if seeing the screen is "reasonable" under the bit about patients having the right to be informed about their treatment.  If I were a judge, I'd rule in your favor, but that's just me.  I would be interested to know exactly WHY your manager refused to tilt the machine.  There may be a good reason, but if you could be allowed to adjust the position of your chair so that you could see the screen without having to move the machine, then the problem is solved.  Maybe one time a tech tried to move a machine and broke it, so the manager is trying to keep that from happening again.  I dunno, but it is possible.

The bigger issue to keep in mind, though, is that of negligence.  If something were to happen to you during your treatment that could have been avoided had you been allowed to see your numbers and call for help in time, but you couldn't see the screen because of some random ruling by your manager, then that is negligence and you could sue their butts off.

If you can prove that a technician purposely falsified information and that this action resulted in harm, I would think you'd have a case for assault.

My concern is that they won't let you see the screen because they are hiding something.

[tyefly]

I cant believe that a dialysis center would not let you see the screen....  Oh  ok   I can...  seems like there are alot of control issues with many centers... I have only been to one center to do in center dialysis and I was allowed to looked at the screen... In fact I would turn my chair so that I could make sure I could see everything all the time... as I wanted to understand what was going on and why... 

I keep hearing this same problem from many people here... We do have patient rights ... how do they get away with this... 

I hope you stand up for your self...  so many dont... they just do what they are told and never question anything...

[YLGuy]

I am sorry you are dealing with this.  I am VERY interested to find out what you learn about this.

[MooseMom]

From time to time, we get new members who are nephs, techs or dialysis nurses.  They do seem to disappear after a while, don't they!  If any of them are around and are reading this, perhaps they can shed some light on the rationale for keeping patients from seeing the screens on the dialysis machines.  The times I visited with my mom during her treatment, I'd always keep an eye on her numbers because I was really intrigued, although my mom didn't seem to care.  I knew more about her treatment than she did, and that just didn't seem right.  I just don't understand this weird practice of turning the machine away from the patient.  Like tyefly pointed out, this doesn't seem to be an uncommon problem.

[Desert Dancer]

Things were going well at the new facility until late last week.  The manager came out with a new policy that prohibited the tilting of machines so that the patient could observe the bp and other numbers. 

When I read this to Andy he said, "WHAT??!! Someone would get punched in the face if they did that to you."   

While I can't advocate punching someone, I'd most definitely point out the "Patient Rights" poster; they've got to have one posted somewhere. I'd also find out what your State law is regarding patient access to medical records - 'cause those numbers on the machine are part of your record. Quote it at 'em chapter and verse - in writing.

Then I'd start dropping dark hints about contacting the State for a little clinic check-up, just to see them sweat.  (Kidding!)

[okarol]

From Medicare's Dialysis Facility Compare

Patients' Rights and Responsibilities

As a person with kidney failure, you have certain rights and responsibilities. When you go to a treatment center, ask for a copy of your rights and responsibilities. This will help you know what to expect from your health care team and what they can expect from you. Your center may have lists like the following.

Your Rights

I have the right to be told about my rights and responsibilities.
I have the right to be treated with respect.
I have the right to privacy. My medical records can’t be shared with anyone, unless I say so.
I have the right to meet with my whole health care team to plan my treatment.
I have the right to see the dietitian for help with food planning and the social worker for counseling.
I have the right to be told about my health in a way that I understand.
I have the right to be told about and to choose my treatment options.
I have the right to be told about any tests ordered for me and the test results.
I have the right to be told about the services offered at the center.
I have the right to be told about the process of dialysis and dialyzer re-use.
I have the right to be told about any expenses that I have to pay for if they are not covered by insurance or Medicare.
I have the right to be told about any financial help available to me.
I have the right to accept or refuse any treatment or medicine my doctor orders for me.
I have the right to be told about the rules at the treatment center (for example, rules for visitors, eating, personal conduct, etc.)
I have the right to choose if I want to be part of any research studies.
Your Responsibilities

I need to treat other patients and staff as I would like to be treated, with respect.
I need to pay my bills on time. If this is hard for me, I can ask about a payment plan.
I need to tell my health care team if I refuse any treatment or medicine that my doctor has ordered for me.
I need to tell my health care team if I don’t understand my medical condition or treatment plan.
I need to be on time for my treatments or when I see my doctor.
I need to tell the staff at the center if I know that I’m going to be late or miss a treatment or visit with my doctor.
I need to tell my health care team if I have medical problems, am going to the dentist, am being treated by another doctor, or have recently been to the hospital.
I need to follow the rules of the center.
I need to get to and from the center for my treatments. I can talk with my social worker if I need help doing this. Medicare does not pay for transportation.


http://www.medicare.gov/Dialysis/Static/PatientRights.asp?dest=NAV|Home|Resources|PatientRights

[noahvale]

^

[billmoria]

What a different culture. At my clinic in a hospital in the UK you are encouraged to know and do as much for yourself as possible. I take my owm BP before and after each session. The machine is always turned towards the patient. I frequently increase or decrease my pump speed based on my venus reading.
What you experienced must be illegal and it is certainly unethical. I think you ought to sue "Susan", the head nurse and the clinic a get as much publicity as possible.

[rsudock]

You would think how lazy and uncaring some of these techs and nurses are they would welcome more patients taking an active role on watching there machines. I would always detect when I started to feel a miss. It wasn't a tech sauntering over being like ,"oh Rachel your BP is getting low...are you starting to feel ill?" They were more content to goof around and talk about what they were ordering for lunch. My tech Michelle was good though I have to admit...even though a tad unprofessional...

I mean for every 6 patients is 1 tech....yeah like they are keeping a close eye on things!

xo,
R

[RealityCheck]

Suppose you hired a contractor to replace your furnace.  Do you think he could put up a screen and tell you that you aren't allowed to know the dimensions and provence of the appliance, and you aren't allowed to watch him work?

Do you think you have fewer rights when the task is medical and your life hangs in the balance?

It astonishes me that anyone would think it is necessary to consult the Patient Rights and Responsibilities to resolve this question.

[The Noob]

totally agree with all comments!
when i switched my hubby to this new center, he began hemo a month afterward. all of a sudden i was out of the loop, and so was he. being the strong advocate i am, i got answers. but it took me being assertive to do so. there was an elderly lady brought over from the facility next door, when she finished her treatment she was wheeled back in the lobby and left. she would sit a long time waiting for someone to come get her. i sat and talked with her one day, she had been waiting an hour, was weak and white and crying. i marched my rear over to the facility and emphatically questioned WHY. i got an aide to come for her. i told the staff that she had grave concerns for her care and i was going to call and make sure she had seen an advocate. i wasn't loud or rude, but assertive. i said i would keep calling to make sure she got what she needed. who was i? just a family caregiver. i saw her a few weeks later and she looked much better and believe me she was picked up as soon as she was done.
and she had seen the patient advocate several times.
there is no reason whatsoever to allow this.

when we found out what had happened to my husband, as well as them breaking out both his front teeth when they intubated (first hospital) i was ripping mad. many calls to attys with them all saying that unless he died as a result, they wouldn't take the case. they don't do dialysis cases they said.
so what if we spent 10 months doing 5-7 tx's a day that were useless, 9 infections and many hospital trips..
this is why if at all able, be an advocate for your care or get some muscle who will!
LOL..patients and family at our clinic want me to start group and newsletter and see what can be done.
we've been there since last october, they have all been there for years. i do what i can for them.
don't put up with no gruff. if you weren't there they'd be out of a job.

[Seamus]

Thanks to all for the supportive comments, especially the very intelligent (they were all intelligent), one that suggested I call ESRD section 15 800 number.  Those people were immediately supportive, called the dialysis center and for the last two sessions I have been able to see the screens.

The comments about suing were right on, however unless I can prove some permanent damage (or die), I haven't found an attorney who will handle a dialysis case. One Doctor-Attorney has expressed some interest but he is intelligent enough to spend his Summers in Michigan while I roast here in Phoenix.  Any activity will have to wait until we get back to double digits 

Thanks again and keep up the good work!!

Seamus

[pagandialysis]

I think after the policy was enacted I would have gone to another chain of clinics. To be honest I am thinking about switching clinics but I am going to give them another chance.

Sorry they are treating you like this. I hope things work out.