Obstinate unit

[JasonEb]

I'm a M/W/F patient going on 10 years.  From the 2nd to last year I only came on Mondays and Fridays (my labs not only didn't suffer, they improved, as well as how I generally felt) even though "officially" my orders were still M/W/F.

About a year and a half ago I finally stopped urinating completely, and began coming Wednesdays JUST to get the fluid off.  I would run for an hour and a half, or until I was dry, whichever came first.  Doctor was okay with it (unofficially), dialysis unit was okay with it, I was okay with it.

Then, on Sept. 8, the state health dept. showed up for an audit, and saw my machine (before I was there) set for an hour and a half.  She inquired and was told the situation.  She stressed that if the unit didn't enforce the doctor's orders, they could lose their medicare license (or whatever you'd call it).

Now here's the kicker...after being asked by the facility manager if she'd (the health dept worker) rather me not show up rather than let me run for a half-treatment, her response was "Yup."

Not only that, but it set off a whole firestorm of crud where I can no longer tell them how much I want to take off, they must go by what the doctor' has my dry weight set at, can't ask for a certain profile ("it's not in the doctor's orders, and that would be practicing medicine without a license," one worker said).

I firmly believe that this is a case of the crapola running downhill.  The state dept worker came down on the unit, so the unit is taking it out on me. 

Any thoughts or ideas how I should handle this (keep in mind that I really like this unit in general, just the situation in the last week has made in untenable)?

[monrein]

Can you see if your doctor can somehow write a flexible order?

[paul.karen]

The Government knows what is best for you and everyone else.
Individuality is a NO NO.

But we all know thats not real..

Monreins advice makes sense.  Ask to be treated like an individual who knows when he feels good.  Were all differnt and not to be treated like the person sitting to our left or right.

Good Luck

[RichardMEL]

wow! that's truly bad - that's like PC gone nuts sort of thing... making rules stick till common sense and flexability is thrown out the window.

In my unit it's actually the D nurses that decide day to day treatment options. Indeed they know more about the mechanics of dialysis treatments and what goes on than half the docs do. In practice each patient is managed by a "primary" nurse who is responsible to oversee their labs, organise stuff like dieticians or iron or whatever. Sure the doctors can modify things if they wan, but on a day to day basis we (as in the nurses and patients - those like me that are interested anyway) make the decisions. For example last month I had a concern about my potassium. Discussed it with the primary nurse, and we both agreed that I should change to a 1K bath to suck more K out. Doc not involved. We noted the decision down and made the change. On a day by day basis, for stuff like UF goals, dry weight, profiles etc - it's pretty much up to us. Well me anyway. If I want a profile I ask and it's set. If I want to change the UF target I ask - and if my reason makes sense (had an extra drink, want to take a bit more off for the weekend, etc) then they're more than happy to do that.

Anyway that doesn't help you.

Could you maybe get the doc to make up a bunch of orders (is it like a sheet of paper in your notes?)... like one for each UF profilr you want, one for the wednesday runs etc? Might that solve the issue with the auditors? I am not sure how that would work since we don't really have that here - at least not so formally.

[YLGuy]

Wow! I understand the state's logic but I would be extremely upset if this happened to me.  I have only been on dialysis since 3/2009 and I decide how much to take off each session.  10 years on D I am sure you know what your body needs/can handle.  I sure hope Monrein's idea is a possibility.

[cloud393]

Another case of darned it they do darned it they don't.  Unfortunately if there were no regulations or rules, think of how many people might be mis-treated just because they don't know better.  Sometimes it's good to have someone come in and say "hey, you guys aren't doing this right", but in your case it's no help to you.  I agree with everyone else, maybe you doc can change your orders.  Hope they can work things out.  Good luck.

[Bill Peckham]

I'm a M/W/F patient going on 10 years.  From the 2nd to last year I only came on Mondays and Fridays (my labs not only didn't suffer, they improved, as well as how I generally felt) even though "officially" my orders were still M/W/F.

About a year and a half ago I finally stopped urinating completely, and began coming Wednesdays JUST to get the fluid off.  I would run for an hour and a half, or until I was dry, whichever came first.  Doctor was okay with it (unofficially), dialysis unit was okay with it, I was okay with it.

Then, on Sept. 8, the state health dept. showed up for an audit, and saw my machine (before I was there) set for an hour and a half.  She inquired and was told the situation.  She stressed that if the unit didn't enforce the doctor's orders, they could lose their medicare license (or whatever you'd call it).

Now here's the kicker...after being asked by the facility manager if she'd (the health dept worker) rather me not show up rather than let me run for a half-treatment, her response was "Yup."

Not only that, but it set off a whole firestorm of crud where I can no longer tell them how much I want to take off, they must go by what the doctor' has my dry weight set at, can't ask for a certain profile ("it's not in the doctor's orders, and that would be practicing medicine without a license," one worker said).

I firmly believe that this is a case of the crapola running downhill.  The state dept worker came down on the unit, so the unit is taking it out on me. 

Any thoughts or ideas how I should handle this (keep in mind that I really like this unit in general, just the situation in the last week has made in untenable)?

 


Medicare's Conditions for Coverage encourage self care. Check in with Beth Witten who knows the CfC forwards and back but in general I think Medicare has your back on this one and the state surveyor is out of line.


By the way, today there was a conference call, an open door forum, conducted by CMS to discuss the new Quality Incentive Program. The relevant thing was during the question time at the end when LeAnn from Texas (I think) brought up a situation and the spokesperson from CMS asked her to write (she was being told that Medicare does not support home hemo). I encourage people who face these arbitrary decisions by units or surveyors to go straight to CMS. Write the Chief Medical Officer barry.straube@cms.hhs.gov ... You could just copy and paste your post.


 

[JasonEb]

Thanks for all the hints, tips, suggestions, and kind words.  I'll address some of them...

Can you see if your doctor can somehow write a flexible order?

That's kind of the current plan.  I had an appt. with him last Thursday morning, but was feeling ill in the morning (shouldn't have had that late-night burrito!) so I rescheduled me for 3 PM.  When I got to the office (and waited 25 minutes in an empty lobby), his nurse came out and told me that my doctor hadn't been told I was coming and had left for the day.  So I had to reschedule again for the 28th of this month.

(I should add that my neph is great...really on the patient side of things.  He "advises" rather than "orders", like "I'd like to and will officially make it that I want you to go 3 times a week, but if you only want to go 2 and feel okay, that's all right with me" kind of thing.  He's just really busy these days .)

So until then I'll hate to put up with this increasingly childish battle with the unit.  Other recent things I've been told is that if I don't follow precisely the policies of the unit (in this case pertaining to not having my temp. taken at the beginning of the treatment), I'll be refused treatment.   On Monday I was told I can't even have the machine turned toward me (I make sure the pressures don't get too high, blood chamber doesn't get too empty, just like to know how much time I have without having to ask, etc.), and when I asked the nurse to call my doctor to challenge my dry weight (I've lost weight every treatment for the past couple months...yay diet!), she said, "That's something YOU'LL have to discuss with your doctor".

I'll admit that when they got super strict on me, I became super-strict on them.  Making them treat everyone else the same as me, and precisely following every guideline and rule that I was aware of (wearing PPE anytime on the floor, making patients who are coughing wear masks, not having cell phones on the floor [the staff, that is], etc.) so I know that's part of it.

[JasonEb]

Another case of darned it they do darned it they don't.  Unfortunately if there were no regulations or rules, think of how many people might be mis-treated just because they don't know better.  Sometimes it's good to have someone come in and say "hey, you guys aren't doing this right", but in your case it's no help to you.  I agree with everyone else, maybe you doc can change your orders.  Hope they can work things out.  Good luck.

The funny part about it is, I'm more than willing to work within the system to still get what I want.  When they first told me that they have to set the machine for 3 hours on Wednesdays, after I gave it a bit of thought, I told them that's fine, we'll just double the amount of weight the machine will take off (that way it'll get the amount I actually want off in the hour and a half), that's when they started with the whole, "No, we have to strictly follow what the doctor's orders say, and the orders say your dry weight is XXkg", and then they gave me a raspberry (okay, maybe that last part isn't true, it just feels that way).

[JasonEb]

Medicare's Conditions for Coverage encourage self care. Check in with Beth Witten who knows the CfC forwards and back but in general I think Medicare has your back on this one and the state surveyor is out of line.


By the way, today there was a conference call, an open door forum, conducted by CMS to discuss the new Quality Incentive Program. The relevant thing was during the question time at the end when LeAnn from Texas (I think) brought up a situation and the spokesperson from CMS asked her to write (she was being told that Medicare does not support home hemo). I encourage people who face these arbitrary decisions by units or surveyors to go straight to CMS. Write the Chief Medical Officer barry.straube@cms.hhs.gov ... You could just copy and paste your post.

Thanks for the links.  I'll check into them immediately!

And again, thanks to everyone else for everything!

[RichardMEL]

So until then I'll hate to put up with this increasingly childish battle with the unit.  Other recent things I've been told is that if I don't follow precisely the policies of the unit (in this case pertaining to not having my temp. taken at the beginning of the treatment), I'll be refused treatment.   

If only there was an emoticon for "the mind boggles"

I mean.. REALLY???

WTF?!

[JasonEb]

If only there was an emoticon for "the mind boggles"

I mean.. REALLY???

WTF?!

More fun and games on Wednesday.  For the first time since this started, my girlfriend (a former dialysis tech and currently works in a lab at a hospital) came by and hung out for awhile so she got to see what was happening in person.

We talked a long while about it afterward, and came to this conclusion:

I caught the charge nurse lying about administering my meds back in January, and since then she has been trying to find ways to "get back" at me.  Then recently, a nurse new to dialysis (she worked 11 years in ICU) started.  Since she worked in the ICU for so long, it seems that she has a "the patient can't make decisions for themself, therefore I must decide what is best for them" mentality.  Great for half-dead people in the ICU, not so good for a chronic condition unit.  Since she came, she's been trying to get me to do things the way she wants them to be done...."for my own good".

So when the State came in and wanted them to tighten up on things, she took the opportunity to force me to do things her way, and the charge nurse backed her up knowing it would aggravate and tie my hands of being able to do anything about it.
Oh, and one of the medical directors (the one that's mainly active in the unit) is a strong "Do things my way or else" type of doctors.  I'm positive she's the one who came up with the "Do things our way or we'll refuse treatment".  She tried it in the past, and got burned by it.

Yes, I know this all sounds paranoid, but I've had quite a bit verified (unofficially) by other people working there.

But just two more treatments before I finally have my appt. with my nephrologist and maybe he'll help me overcome this stupidity.