Can a unit take away a priviledge for specific patients?

[JasonEb]

As I have posted a few times here, my unit's new management (same doctors own it, but there are a new DON and facility manager) and I are in a bit of a war that they keep escalating in an attempt to drive me out.

Last Friday, I was accused of taking pictures with my cell phone during my treatment the previous Friday.  I had done no such thing and was told (along with given an insane behavioral contract that a coma patient would find impossible to comply with) that I would only be allowed to dialyze if I surrendered my cell phone to them during the treatment.

Now, I use my cell phone to text with my significant other while on treatment, and the way I hold my phone could possibly be misconstrued as me taking a picture (I hold the phone high in one hand in order to see it clearly, and use my thumb to type on the keyboard), but no one ever asked me if I was taking pictures or anything..but that's beside the point of my question.

Can a unit levy specific rules to individual patients, even when they admit they have no specific policies regarding cell phones?  Can this be considered discrimination?

[PatDowns]

I suggest you contact the ESRD Network in your region for an answer.  Why are adminstrators trying to get you to leave?

[KarenInWA]

Are you on the transplant list?  If so, how can they demand you surrender your cell phone during treatment when you need to have it near you at all times?  Do they not grasp how this can work against you, and also against them???

KarenInWA

[M3Riddler]

As I have posted a few times here, my unit's new management (same doctors own it, but there are a new DON and facility manager) and I are in a bit of a war that they keep escalating in an attempt to drive me out.

Last Friday, I was accused of taking pictures with my cell phone during my treatment the previous Friday.  I had done no such thing and was told (along with given an insane behavioral contract that a coma patient would find impossible to comply with) that I would only be allowed to dialyze if I surrendered my cell phone to them during the treatment.

Now, I use my cell phone to text with my significant other while on treatment, and the way I hold my phone could possibly be misconstrued as me taking a picture (I hold the phone high in one hand in order to see it clearly, and use my thumb to type on the keyboard), but no one ever asked me if I was taking pictures or anything..but that's beside the point of my question.

Can a unit levy specific rules to individual patients, even when they admit they have no specific policies regarding cell phones?  Can this be considered discrimination?

Jason,

I would ask to view the Patient Rights Poster. Each center/unit has to have this posted where patients can access it to read. This should answer your questions and what rights you have in the center.....
I can understand why they would not want any pictures due to all the Medical Info and the HIPAA Laws....

[greg10]

..
Now, I use my cell phone to text with my significant other while on treatment, and the way I hold my phone could possibly be misconstrued as me taking a picture (I hold the phone high in one hand in order to see it clearly, and use my thumb to type on the keyboard), but no one ever asked me if I was taking pictures or anything..but that's beside the point of my question...

I don't suppose you can get a phone that has text but is lacking a camera?

[lawphi]

My husband was accused of the same thing on an iPhone while watching netflix.  I would ask for your chair to be moved where it would not matter or to use the isolation room.

I would seriously look into NxStage or home hemo. You avoid all the issues. 

[lawphi]

Could you put a piece of colored duck tape over the camera during your procedure?  Problem solved. 

[lmunchkin]

Diffidently look into PD or Nxstage at home.  We just couldn't hack all the rules given by In-Center.  They are going through alot of red tape themselves with all these rules they have to follow.  I know of a few really good D nurses and they tell me it is unreal what they have to do.  They can't give patients the kind of quality care that they would like!  Trust me, it is not so easy for them with all that they have to do.  Yea, there are some bad ones but for the most part they really give it the best that they can!

Hubby just left his cell in the car!  He just wanted to rest while they D him. But now I do him at home (NxStage) and we have managed to do alot of things together like eat, watch TV, cuddle.......ect. I have grown to love him even more, if that is possible!

But if you remain at that Incenter, do request the Patients Right Poster as previously suggested.  If that doesnt work, just go up the chain of command till you get the answer you want.  As much as I hate to say, if you can't get in a different center, you may just have to do as they wish.  But if you did not take picture's as you say, then fight it all the way to the top!

Good luck,
       lmunchkin     

[Lillupie]

A reason why I do PD. When I first started, and had a hernia, I had to do hemo until the heria repair was healed.
 Let me tell you, in my ceter, there was no eating, drinking, talking on the phone peroid!, and here is the worst one, you could not plug in any outside devices! So you can bring in a portable DVD player, or lap top computer, but were not allowed to plug it in! Once it died thats it. I was caught texting, and got yelled at for that. The doctor thought that cell phones would interfere with dialysis THat is what I say to them. No way would I do hemo for those rules. Worse then being in prison, I thought.

Lisa

[RichardMEL]

wow insane stuff. I do know here they don't like pictures being taken because you're not supposed to have pictures involving other patients without their consent etc - which is absolutely fair enough, but they are fine if it's just pictures of you or you're allowing it. The thing is there's accusations but no trust which I find interesting. I know down here cell phones are supposed to be programed to make a camera sound that unless you hack your phone you can't turn off - I think this is to make it obvious that a picture is being taken, and stop the lowlifes from taking pictures in changerooms and up skirts and stuff because the noise is loud so it would alert people. I don't know if that's a universal law (and anyway you can hack that out if you really want, not that I care to).

I do agree this seems to be a rights issue, and I would question refusing dialysis care because of something like that. heavens everyone uses cell phones to communicate and on dialysis it's one way to keep in touch with reality and pass the time - specially texting rather than talking loudly and annoying people!

Of course if the unit was SMART about it they'd have just brought in a rule banning phone use for EVERYONE using the usual excuse of interference with the machines (we all know that's crap) - that way it wouldn't be personal. It seems to be personal here which sucks.

I hope you can get some kind of good resoltuion.

[rsudock]

NO WAY FOLKS he should not have to go out and purchase a new cell, leave it in a car, or put tape over the camera...what are they afraid he is taking pictures of? I am sorry there is not patient info laying out in front of other patients! I mean if that is the case why is it these stupid dialysis centers talk about personal private things in front of other patients? I'm sorry I need my cell phone to call people and keep me entertained! Dialysis is boring enough...no cell phone added to it...shoot me now!!! Fight it Jason...I would!

xo,
R

[JasonEb]

I suggest you contact the ESRD Network in your region for an answer.  Why are adminstrators trying to get you to leave?

The new facility manager is a tyrranical former tech that only took the job because no one else wanted it.  She wants everyone to be complacent...errr, I mean compliant 

The previous administrations (I've been dialyzing for over 10 years now, and have been at this unit since it opened in 2003, longer than any other patient or staff member) may not always agreed with the decisions I made, but always respected my right to make them.  Since the new facility manager (and there's a new DON, too) has started, she has attempted to make everyone forcibly comply with rule, policy, and guideline, no matter how minor.  No more turning the machines so patients can see and monitor things...well, to put it basically, everything a tech wishes they could do to make their job easier (not better for the patient, though).

Now, my prescription from my doctor is for me to dialyze 3x a week.  However, I have only gone 2x a week for the past 9 years.  He (my neph) won't change the order in order to protect himself, but has always respected my right and reasoning for only going 2x per week.  But since the prescription is for 3x a week, the unit (my neph is not stationed there) must set up my machine and my absence counts against their "numbers".  This, and my attempts to continue to do other things I had done (and been allowed to do) for many years is the reason why I think the facility manager has been trying hard to drive me out for months now.

They've forced behavioral contracts on me ("Sign this right now or you can't dialyze!"), manipulation, and bullying have been their main tactics, whereas I have constantly tried to find a happy middle ground so that both them and I get what we want.  Nope, it's basically their way or the highway.

I have complied with every contract, or policy that they have proven in writing to me for months now, even though I continue to attempt to fight for my rights through Network 13 and whatnot.  We were in monthly meetings with Network 13 to work out issues (who states that what has gone is at least partly the unit's fault), and thought things were simmering down a bit.

That is why I was so surprised when I came in on May 13, and the facility manager pulled me aside, made this claim that three people on the previous Friday (05/06...my birthday, no less!)  saw me walking around, taking pictures and taking notes from other people's machines.  I NEVER took any pictures, I NEVER approached anybody else's machine, and only walked to the end of the nurse's station (my chair is at the other end, about 8 feet away) to see the next aisle over and count how many people were on the floor (one of my complaints for a long time is that at lunch times, there might only be one or two staff on the floor to take care of 20 patients.  I took notes about my treatment only from my chair.

Now, I'm pretty sure I know who two of these people are who made this claim.  One is the DON who has been side-by-side with the facility manager in the attempts to drive me out, as she was the one who did my assessment that day.  The other is an RN who I have asked many times not be involved in my treatment as she is overly intrusive and it stresses me out.  I highly doubt there was actually a third person, as I had nothing but friendly (or at least civil) contact with everyone on the floor that day.

Anyway, when the facility manager made this claim, she would not give me any names, any times, any specifics whatsoever other than I had been seen "walking around taking pictures and notes of other people's machines".  She then proceeded to give me a critical incident report, and thirty-day behavioral contract, and a 30-Day Discharge Letter...all of them filled with unsubstantiated claims (that I continued to be non-compliant), forbidding me to bring things I've never brought to the unit (I have a pen with a built-in audio recorder that I've talked about at the unit but never brought, but there are stipulations that I'm not allowed to), that I have to give up my cell phone during treatment, and straight out lies (that I was taking pictures and notes of other patients and their machines).

I immediately offered to show the manager and the social worker all the pictures in my phone, but they both refused.  I was told if I didn't sign these forms immediately I would be refused dialysis.  In good conscience I could not sign them, as that would be admitting guilt to something that I absolutely did not do, and to something they refuse to even give me the chance to defend myself on.

Oh, and I asked why no one had asked me on the day that I supposedly done this why no one had simply asked me if I was taking pictures, or what I was taking notes of, and the facility manager claimed "They were scared to", which is ridiculous (and a lie, I suspect), because as I said earlier, I had nothing but friendly conversations with everyone that day, and NO one had been scared to talk to me.

So, now I'm waiting for Network 13 to call me back so I can tell them what happened (this was last Friday I was refused dialysis), and I've now gone 8 days without dialysis.  I feel great, my bp is great, my fluid is just fine (just been watching my intake), and my potassium is within normal range.  Hmm, might have to talk to my doctor about lowering my days/time.

[JasonEb]

Are you on the transplant list?  If so, how can they demand you surrender your cell phone during treatment when you need to have it near you at all times?  Do they not grasp how this can work against you, and also against them???

KarenInWA

No, I am not on the transplant list for some personal reasons (but I'm a heck of a lot closer to getting on it now!

[JasonEb]

Jason,

I would ask to view the Patient Rights Poster. Each center/unit has to have this posted where patients can access it to read. This should answer your questions and what rights you have in the center.....
I can understand why they would not want any pictures due to all the Medical Info and the HIPAA Laws....

Oh, I know my rights inside and out (which I have a feeling is one of the reasons they are trying to force me out...because I've called them on it when they violated them many times!), but they insist their legal counsel says they can take specific rights away from an individual patient for violating policies.

OH!  They claim that it was a HIPAA violation what I allegedly did (but actually didn't), but HIPAA doesn't even apply to patients!

And I agree about not taking pictures without consent...which is why I have never done so, nor planned on ever doing so!

[JasonEb]

I don't suppose you can get a phone that has text but is lacking a camera?

I'm sure I could quite easily, but the point is why am I allowed to be discriminated against when everyone else (patients and staff) are allowed to keep their phones with cameras in them!

[JasonEb]

My husband was accused of the same thing on an iPhone while watching netflix.  I would ask for your chair to be moved where it would not matter or to use the isolation room.

I would seriously look into NxStage or home hemo. You avoid all the issues.

I have been in the same chair since that unit opened in January of 2003 (except when they occasionally needed it in an emergency, of course), and the way the unit is set up it wouldn't matter where I sat, I'd be facing someone.  Plus, I get claustrophobic in the isolation rooms and had bad experiences being ignored while crashing the couple times I used it.

As for home Hemo, I like the idea of going to a unit, and being able to leave dialysis there when I am done.  Plus, for the most part, I'm extremely happy with the quality work the techs at the unit supply.

[JasonEb]

Could you put a piece of colored duck tape over the camera during your procedure?  Problem solved.

My girlfriend suggested the same thing.  However, at the time this was all presented to me by the facility manager, I was told there would be "No discussion, No negotiations, No being allowed to defend myself, period.  Sign this, give up your phone, or we will refuse you dialysis".

I know the easy thing to do is "just go elsewhere", be it home hemo or another unit...but I feel I have been horribly, possibly even criminally discriminated against and had my rights violated and will NOT back down from this.  Sometime we just have to say "ENOUGH!  I'm mad as hell and I'm not going to take it anymore!!"

Ah, Network...good movie.

[PatDowns]

@ JasonEbRe: Can a unit take away a priviledge for specific patients?
« Reply #11 on: Today at 12:38:37 PM »

Your responses bring up so many red flags.  However, I will address a few of them in good faith:

1) Your nephrologist has prescribed x3 treatments per week because he believes that is what you need.  Does the reason he "understands" why you will only go in x2 have more to do with personal issues as opposed to medical?  If your lab results and general physical well-being indicate x2, then he has medical justification to writing that prescription.  There would be no reason to "protect" himself.

2) On the days you are supposed to go in and don't, call the facility at least 2 hours ahead of your treatment time (or better yet, the day before) to let them know you will not be in.  This way,  staff will not string your machine and supplies are saved.

3)  "...So, now I'm waiting for Network 13 to call me back so I can tell them what happened (this was last Friday I was refused dialysis), and I've now gone 8 days without dialysis.  I feel great, my bp is great, my fluid is just fine (just been watching my intake), and my potassium is within normal range.  Hmm, might have to talk to my doctor about lowering my days/time..."  -  Haven't dialyzed in 8 days and feel good?  How do you know your potassium is within normal range?  Lowering your days/time to what? One? For me, a BIG red flag to your sincerity.

4) If you have quality of care/safety issues with the center, I'm sure Network 13 staff will do all it can to help resolve them.  Yet, there is not much they can do if it is a pissing match between you and the facility.  However, if you feel Network 13 isn't helping you get the relieve you deserve, then hire an attorney.  Contact local legal aide society if you can't afford one.  Or, go to local TV/newspaper and let them know what is happening.

5) "Giving up is not giving in, nor is it failing. It is no longer needing to be right." - Embrace this advice and move on to a different facility.  Your current situation probably has become too toxic for resolution.  Involve your nephrologist and Network 13 to find a center that would be more willing to work with you in meeting your needs.   Or, go on NxStage or PD where you will have complete control of your treatment environment. 

[lmunchkin]

Excellent advise Pat Downs! Too much drama going on there, he should just move on!  I would highly recommend NxStage or PD. Problem Solved!!!!!!!

lmunchkin       

[sullidog]

We are aloud to use our phones we just can't have our chargers plugged in in the treatement floor as it's a fire hazard.

[RealityCheck]

Could you put a piece of colored duck tape over the camera during your procedure?  Problem solved.

My girlfriend suggested the same thing.  However, at the time this was all presented to me by the facility manager, I was told there would be "No discussion, No negotiations, No being allowed to defend myself, period.  Sign this, give up your phone, or we will refuse you dialysis".

I know the easy thing to do is "just go elsewhere", be it home hemo or another unit...but I feel I have been horribly, possibly even criminally discriminated against and had my rights violated and will NOT back down from this.  Sometime we just have to say "ENOUGH!  I'm mad as hell and I'm not going to take it anymore!!"

Ah, Network...good movie.

They need to be taught a lesson.  Forget the Network.  Call the state.

[JasonEb]

@ JasonEbRe: Can a unit take away a priviledge for specific patients?
« Reply #11 on: Today at 12:38:37 PM »

Your responses bring up so many red flags.  However, I will address a few of them in good faith:

I always welcome any viewpoints, whether I agree with them or not!

1) Your nephrologist has prescribed x3 treatments per week because he believes that is what you need.  Does the reason he "understands" why you will only go in x2 have more to do with personal issues as opposed to medical?  If your lab results and general physical well-being indicate x2, then he has medical justification to writing that prescription.  There would be no reason to "protect" himself.

First, I suppose I must explain my history a bit.  I a 38 and been on dialysis since I was 27.  M first couple years I went 3x a week, as prescribed, and those years were a figurative Hell.  I can't speak for how it affects anyone else, but the act of dialysis wipes. me. out.  For the entire day of dialysis, and at least the day after.  No amount of fluid removal adjustment or anything else worked.  When I started going 2x a week AMA, I still felt (and feel) like sludge the day of and day after, but now I have a few days a week were I am able to maintain something resembling a life.  Oh, and last year I tried going 3x a week again for a few months to see what would happen.  Same result as those early years.

Now, I understand that going 3x a week will extend my life and understand my doctor's goal (and most doctor's goal in my experience) is to prolong my quantity of life, whereas for me, quality of life is more important.  In other words, I would rather live 20 years feeling well a few days a week than 40 years virtually never feeling good. After tinkering over time with different treatment lengths and number of treatments per week (believe me when I say I am very methodical and rational in my decision making), I discovered going 2x per week afforded me the greatest amount of benefit (energy, quality of life) with the least amount of deficits (fluid and waste build up, dangerous lab values).

Still, my nephrologist, as I stated earlier, recommends 3x a week treatment because it will extend my life number-wise, but respects and understands my informed decision.

It's really a choice each patient...no, each person has to make, and I feel one of the problems in the medical field today is, despite the lip service, the patient is taken out the equation of what is truly "best" for the patient.

Whew...can you guess I'm a big proponent of living wills, assisted suicide, and other pro-patient empowering directives? 

2) On the days you are supposed to go in and don't, call the facility at least 2 hours ahead of your treatment time (or better yet, the day before) to let them know you will not be in.  This way,  staff will not string your machine and supplies are saved.

This one may have been my fault for not being clearer.  Even though it has been known since Day 1 at this unit (in 2003) that I won't be coming in on Wednesday, on Monday either I would tell them I wouldn't be there on Wednesday, or someone would ask me if I was going to come in.  It has been years since I haven't shown up without contacting them...heck, it's been years since I hadn't shown up on Monday or Friday, period!

3)  "...So, now I'm waiting for Network 13 to call me back so I can tell them what happened (this was last Friday I was refused dialysis), and I've now gone 8 days without dialysis.  I feel great, my bp is great, my fluid is just fine (just been watching my intake), and my potassium is within normal range.  Hmm, might have to talk to my doctor about lowering my days/time..."  -  Haven't dialyzed in 8 days and feel good?  How do you know your potassium is within normal range?  Lowering your days/time to what? One? For me, a BIG red flag to your sincerity.

I have a standing order to check potassium, as it has run high pretty much most of my life (even long before kidney issues).  I normally run in the low sixes (6.1-6.3), and last night it was 7.2.  High, but not unheard of for me.  I dialyzed at the acute unit, was only about 3 kilos over dry weight, and bp was good.  Again, I know bad things were happening to my body by not dialyzing, but overall I felt fine (compared to now almost 12 hours after dialyzing where I've had to stop writing several times and go lay down).

4) If you have quality of care/safety issues with the center, I'm sure Network 13 staff will do all it can to help resolve them.  Yet, there is not much they can do if it is a pissing match between you and the facility.  However, if you feel Network 13 isn't helping you get the relieve you deserve, then hire an attorney.  Contact local legal aide society if you can't afford one.  Or, go to local TV/newspaper and let them know what is happening.

Network 13 is...investigating...but apparently has a history (from what people up and down the dialysis food chain has told me, so I don't know for sure) of siding with the units and telling the patient essentially "That's the way it is...accept it or move on".  Still, I am trying to work within the system by giving my evidence defending myself to the Network rep. (my notes for the day in question, the texts that are still in my phone from that day, all pictures in my phone).  I merely ask that the unit do the same, which they refuse to do (because frankly, there isn't any!)

I have also spoken with one lawyer, who admitted it wasn't his field of expertise and has pointed me in a couple directions. 

5) "Giving up is not giving in, nor is it failing. It is no longer needing to be right." - Embrace this advice and move on to a different facility.  Your current situation probably has become too toxic for resolution.  Involve your nephrologist and Network 13 to find a center that would be more willing to work with you in meeting your needs.   Or, go on NxStage or PD where you will have complete control of your treatment environment.
[/quote]

"in matters of principle, stand like a rock."[/b]~Thomas Jefferson.

I appreciate the honest concern and advice, and am indeed taking steps to move to home hemo, this is one of those matters every person goes through from time to time where you know you are being wronged, and have to stand up to it.

[RealityCheck]

Units do not fear the Network for a very simple reason:  Networks cannot impose sanctions.

When the Network receives a complaint they believe shows misconduct on the part of the unit, they call the state department of health.

But your grievance procedure, part of your patient rights, makes it clear you have the right to call the state.

Units truly fear calls to the state because they result in the state visiting the units.  Many units have not been visited by the state in more than a decade.  When the state visits, the inspector has her (I am sure there are men surveyors, I have just never seen one) eyes open to all procedures going on in the unit.  Managers fear this.  It means their staff are subject to being noticed in a wide array of errors that will end in making the manager and the Regional Director and the quality nurse, among others, look bad:  poor hand sanitation, med errors, lack of signatures on second checks and daily assessments, catheter care.  The state tends to side with the patient.

I cannot speak for all networks, but the one I worked in took pains to educate the units to understand they could never discharge a patient for "non-compliance" in terms of diet and medication adherence, and increasingly even in treatment appointments.  If a patient chronically missed treatments, the unit could write them letters of concern and move their appointment to the last shift, eventually only set up the machine after the patient appeared, and after long, long absence, remove them from the schedule and only find a spot when the patient appeared or re-contacted the unit asking for more treatments, but never discharge.  For each step, the unit has to notify the network and send a certified letter to the patient that also notes the patient's rights and the grievance procedure.

If you had posted pictures of the unit on the web, they could probably take the steps they did with the state's and the network's blessing because they could say it violated the rights of other patients.

If they have no proof you took pictures, they are clearly out of order in banning your phone, even if other patients have complained that they think you took pictures.

If they are bullying you, and you call the state, and you tell the state you would like your identity withheld, inspectors will usually try to submerge your particular issue in an investigation of other issues when they visit.  If the unit can perceive the visit is in fact in response to your call, and after it they retaliate against you in some way, even if only verbally confronting you about the call in any way, they have stepped into deep water.  At that point you could call the state, your congressman, the network--even the local media.  The state might require them to inservice all their employees about the prohibitions on retaliation for complaints.

You say that you established a pattern where you come to dialysis twice instead of three times a week and you are willing to accept the health risks.  That is certainly your right.  I'm sure some of the staff worry about you, but the management will also lament your choice because you are taking up a 3 time a week spot and causing them to lose money when they aren't able to plug a visitor into that 3rd day.  This alone could make you a target.

[kitkatz]

    To your dialysis peeps.

[JasonEb]

If you had posted pictures of the unit on the web, they could probably take the steps they did with the state's and the network's blessing because they could say it violated the rights of other patients.

It's funny, they used to take pictures of people on the machines and in the unit all the time, on birthdays, holidays, and whatnot.  I used to complain about it because I felt it was undignified for the patients.  I also have recommended some kind of privacy curtains for all patients since so we don't quite feel like being stared at by visitors, deliverymen, staff guests, and so on.  So the very idea that I would go around taking pictures and violating patient privacy is absurd.  If they were going to make something up, at least do something that's within my character!

If they have no proof you took pictures, they are clearly out of order in banning your phone, even if other patients have complained that they think you took pictures.

Out of order, perhaps, but everyone from the Network to lawyers I have talked to said that, as a private business, they have the right to do so.  Oh, and it wasn't any patients who "claim" they saw me, it was "some" staff.  Now you know as much information as they've been willing to give me.

If they are bullying you, and you call the state, and you tell the state you would like your identity withheld, inspectors will usually try to submerge your particular issue in an investigation of other issues when they visit.  If the unit can perceive the visit is in fact in response to your call, and after it they retaliate against you in some way, even if only verbally confronting you about the call in any way, they have stepped into deep water.  At that point you could call the state, your congressman, the network--even the local media.  The state might require them to inservice all their employees about the prohibitions on retaliation for complaints.

You say that you established a pattern where you come to dialysis twice instead of three times a week and you are willing to accept the health risks.  That is certainly your right.  I'm sure some of the staff worry about you, but the management will also lament your choice because you are taking up a 3 time a week spot and causing them to lose money when they aren't able to plug a visitor into that 3rd day.  This alone could make you a target.

This last paragraph is the exact reason I think they have been trying to kick me out.  If they had just come to me and said, "You're costing us money, and we don't really want you here anymore", I could at least respect them for their honesty.  But instead they've been cowards and hidden behind their "power".

Anyway, thanks for the great info!