Horrors

[Trikkechickk]

While talking to my Friendly NX Nurse, she told me that Medicare now has new requirements for those who still Pee.
Seems that in calculating KT/V the urine produced will no longer be credited in that calculation.  Meaning we will have to add more time the bring the value of KT/V to 2.0.

For me, I will go from a short 1 hr and 41 mins (20 liters) to 25 liters meaning 2 hours and 20 mins of treatment.
The Home Hemo staff wasn't to thrilled at this news either.  Oh well, what can I do?  Just go with it altho, sitting on a couch will drive me nuts.

[MooseMom]

No one likes more time on the machine, but do you think that in this case, more time means better dialysis?  Does the home hemo staff think this will give better clinical results, or are they just annoyed that the goal posts are being moved?

[lmunchkin]

I know that being tied to a machine must really be frustrating, I understand that!  But the longer I have hubby hooked, the better he feels. He is prescribed 20L also, but I never run him less than 3 hrs.  The longer he is on, the better he feels!  You do not have to increase the dialysate 5L to get longer times.  What is your BFR & FF running?  How much fluid are you trying to remove?

Yea, I bet longer is more aggravation, but feeling better, IMHO, would be worth the time! You got me curious now!  Let me know, please!  I might can help in some way.

lmunchkin   

[Trikkechickk]

Clinical results for me have been perfect (within normal range) since I began D 3 1/2 years ago.  And my diet has been pretty flexible, altho I do watch amounts.  I still pee 100% so fluids are not a problem. (It keeps nocturnal HD not really a perfect fit for me yet unless I get a porta potty).   Agreed that longer periods of time are better for all.

The gang at the HHD office are worried they will loose patients with the extended time involved.  Remember, this is done 5 days a week, not 3. 

MM you haven't started D yet, so you have no idea of what sitting in a "chair" is like - there's a bit of a burnout factor involved, but most of us get "over it".

[MooseMom]

MM you haven't started D yet, so you have no idea of what sitting in a "chair" is like - there's a bit of a burnout factor involved, but most of us get "over it".

That's very true, although my mom was on dialysis for the last five years of her life, and I know how ecstatic she was when they reduced her time by just fifteen minutes (and she was doing only three times a week).  At the time, I thought this was wonderful news for her, but it turned out not to be.  If she had had access to more dialysis, she may still be alive today, but that's another story.

But I am curious...what is the rationale behind Medicare having new requirements?  I mean, do they just sit around a table and make stuff up?  There must be a clinical reason that's not being efficiently communicated.  It seems that once again, it's all about money.  If your clinic doesn't think that these new requirements are appropriate for YOU, then why make you comply?  Could it be that they would lose the money that you brought in via Medicare if they, the clinic, didn't comply?  I find it interesting that your HHD office seems to be worried more about losing patients than about what the appropriate prescription should be for each individual patient.

Can you refuse the extra time?  I would think it would be illegal to force a patient to undergo treatment that s/he does not want.  Surely there can be a form you can sign accepting full knowledge and responsibility and thus absolving the clinic from any legal liability.  Maybe this is being too simplistic of me, but surely you can just refuse to lengthen your time?

[Meinuk]

I would ask your nurse "Show me the Medicare Requirement" I think that you'll find that it is a corporate descion that has nothing to do with Medicare.  (Any chance that your clinic is a DaVita clinic???)

People often get confused.  Your nurse is placing blame on the wrong entity.

It is important to remember that Medicare is simply trying to set a baseline of safety with regard to dialysis. Yes, they are the biggest "insurer" in the dialysis industry, but these clinics (especially the for-profit ones) often "blame" medicare for things that they need to trim to save money.  As far as setting policies for Kt/v, I have no idea what they are up to.  I'm not a fan of KT/v anyway.  But that is the measure that we have to live with for now.

Don't ever take "Medicare says so" as any kind of excuse.  Make them show you where in the Conditions for Coverage, Bundle, Interpretive Guidelines or Benefits Policy Manual these "rules" are in.  Too many people make stuff up and then don't expect to be questioned if they say "the government says so".

To add even more fuel to the fire, if you are not a Medicare Beneficiary yet, ask "What does this have to do with my private insurance?" Remember, the "Bundle" ONLY affects what clinics are paid for treating Medicare Beneficiaries.  My private insurance paid a heck of a lot more than the Medicare rate.  If a for-profit clinic skimps on everything, they'll eek out what they can from Medicare and make a "killing" on the private insurance that pays more.  Of course, my opinion on what for-profit dialysis it is really killing:  US.

Here are links to all of the above mentioned Medicare rules.  You can share them with your provider if they have questions.  Knowledge IS power.

Medicare Conditions for Coverage (The rules for a dialysis faciility to be able to qualify for Medicare reimbursement - if they don't meet these MINIMUM guidelines, they will not be certified/paid):  http://www.cms.gov/CFCsAndCoPs/downloads/ESRDfinalrule0415.pdf

Medicare Interpretive Guidelines for State Surveyors (the Conditions for Coverage are inspected and enforced by the State - this is why state inspections are so important.)  These are the "Guidelines" to the CfC "Rules" above: https://www.cms.gov/manuals/Downloads/som107ap_h_esrd.pdf

Medicare Benefit Policy Manual ESRD (this is detailed and updated "what is paid for") :  http://www.cms.gov/manuals/Downloads/bp102c11.pdf 

Medicare ESRD Bundled Payment Information (this is the legislation and corroberating documents that changed how things are being paid for): http://www.cms.gov/ESRDPayment/

[Meinuk]

There is a lot of controversy about quality of care (see ProPublica).  Medicare is in the spotlight because they set "the rules".  But we always have to remember that the providers are the ones who are providing the treatments and care, and they are the ones who are failing to meet minimum requirements when we hear about epic failures in dialysis care.  There are a lot of lies out there told because either providers do not understand or simply don't want to pay for something.  One whopper that I have seen on these boards:  "Medicare won't pay for home Hemo" YES, MEDICARE DOES PAY FOR HOME HEMO.

Besides paying for things, Medicare is in charge of oversight.  State Agencies are contracted by Medicare to inspect dialysis facilities.  If they find "deficiencies"  - meaning that facilities are not up to the MINIMUM standards in the Conditions for Coverage, the State Inspectors will cite the facility and send the information to the area ESRD Network (also a Medicare Contract) who then start working with the facility to "fix" the problem(s) usually by developing a program that can last for months and involves monitoring and staff re-training. 

In some cases, the state will find an "Immediate Jeopardy" (IJ) and in the case of my former clinic: DaVita Life Care in Manhattan, things were so bad that the State closed the clinic permanently by pullling their licence. (The State Department of Health Licences out patient dialysis clinics).  It could not be fixed. The nine people that were infected with Hepatitis C could not be fixed with a QAPI plan.

There are not enough inspections going on, if you read the dialysis facility reports that propublica has published, you can see that more needs to be done.  People are advocating for change, and slowly, practitioners are listening.

Things are being done.  Too slowly for my liking, but at least it looks like things are going a fairly upwards direction.  It helps to pull back the curtain and have transparency.  Large Dialysis Organizations (LDOs) have Risk Management Teams and Quality Improvement Departments. These are not revenue generating departments. 

Technicians, Drs, Social Workers and Nurses HAVE to complete educational programs to maintain their licences/certifications.  They need to be educated, and in cases like this, you can educate your Nurse.  Maybe she just does not understand what Medicare's role is in dialysis.  If you have read through all of the words that I have written (as Noahvale said, "why use one word when 10 will work") and if I made any sense, you can tell her - she is confusing her company's policy with a Medicare policy. (and with all these policies coming at you, it can get confusing)

We have to try and make the system work. As patients and care partners, we can try to understand WHY providers are doing what they are doing, and then we can make the best choices for our care.  You are as much a part of the care team as they are.  They can't just blindly say "Because Medicare says so" and have you not question them. 

Having a facility force your husband to have more dialysis, while it is annoying, well, that is great in my book.  In the majority of cases, MORE DIALYSIS IS BETTER.  I once had a woman complain to me that every month someone at her clinic was nagging her about home hemo.  she hated it that all could do was smile. I remember the days when people had to beg to get on home hemo (and in some cases, still do).  I'm sorry that she is annoyed, but you know what - it was still music to my ears.

At once conference recently, I overheard a bigwig saying: "you know, I saw a wife cannulate her husband to do this home dialysis, it was AMAZING" Again, I smiled and walked away.  These are little victories in our care that were almost unheard of just a few years ago when I started dialysis.  We've come a long way baby - but we still have a long, long way to go.

[Trikkechickk]

I think some of the problem with Dialysis is that "one size fits all".   Case in point:

In November I had severe food poisoning (7+ lbs lost overnite) - as you know we are obsessed w/our weight.  3 days later I went to the emergency room (just not recovering).  ER nurse could not find a vein for possible fluids as all my veins were collapsed.  Finally, after ultra sound - they found something to stick.  (Severe dehydration).

Next, the Neph on call contacted. He refused any fluids for me.  Since I was a D patient, of course I can't have fluids, right?  One size fits all.  I was panicked - I don't want to loose what function I have left.

Finally, after much ado from me, my "real" Neph was contacted. He ordered 2 liters of saline quick drip, and another over 24 hrs.

I think some of the gang at HHD realize that some of us still have some kidney function left.  Also, being a corporate entity, there is pressure on them to "keep their #'s (patients) up.  Anyway, being the compliant one (voted most compliant by my center) will do as told. I am not "confrontational".

Besides, more D might be beneficial, whatever....

To me time is so much more valuable than things.