“NIH More Frequent Dialysis Studies in a Nutshell.”

Discussions for Patients, Family, and Friends HD For Patients
21

[quote=“Gus”]…Thanks for posting your experience that you had in that situation, I know that there are more patients who have had similiar experiences as yours and must stress that this kinda treatment and even worser is happening all over the nation. …

If I had not been well educated by the people like you who post on these boards it could have been much worse, but I’m still stunned that there are actually medical professionals who are so ignorant and close-minded.

Many years ago I accepted the fact that in order to get good medical care we have to be educated, well informed consumers. But when it came to dealing with something as critical as kidney failure, fistula/access surgery, and dialysis, I naively expected a higher level of competence. :shock:

I know better now, but I’m still a little angry and upset over what could have happened to my husband if I had not decided to do online research in order to help him prepare for his future medical care. He’s the patient and actually dealing w/ his medical issues but we had decided my share of helping him w/ this was to be as educated as possible to help him make informed choices. He knew I could not just sit by and do nothing and that at some point he will probably need an advocate to speak for him. What if we had decided to just rely on the medical professionals for information? Just the thought, that we could have done that, still makes my stomach churn. I’ll get past this, and the anger will lessen. However, I think will forever be a little more apprehensive at every point he is required to make an informed choice about his own care. In the back of my mind will be the question, “What have they not told us that we should know before making this decision?” ---- but as long as we have all of you here, I’ll feel much better. :slight_smile: You are Angels to spend your time educating us “newbies”.

22

That is so sad. Maybe after you set the example others did follow.

23

Patience, persistent we’re doing our job and will win. Hang on the wild ride!

24

I think home dialysis is a great option-but only for a few select patients. I have worked in dialysis for 5 years and some of the patients who have had intrest in home hemo I would never sign off on recommending them for the home hemo program.It would be like letting a bull run wild in a china shop. At our unit we have a nocturnal program which the patients run 8 hours and the feel great, labs are perfect. This is also an option that doesn’t interfere with daily living. :mrgreen: I am sorry for those of you who go in center and have doctors that are against home hemo. That is very unusual to me because we have doctors who are very supportive of patients no matter what modality they chose. When a patient is admitted to our unit, they are informed of every possible treatment option. However, I think this process should start with initial diagnosis be it in the doctors office or when the patient has sudden onset in the hospital.

25

I agree that the treatment option discussion should come right away when someone is diagnosed with chronic kidney disease or no later than when their GFR is 15-30. Every urgent start patient should also be given all options. CMS is putting a huge effort into Fistula First. I’ve often wondered why CMS isn’t putting as much effort into a Home Dialysis First initiative?

I don’t agree that only “a few select” patients can do home dialysis. I have worked with dialysis patients since 1978. I have seen patients do very well on home hemodialysis who:
– had less than high school education
– were elderly in their late 70s
– lived in homes that so rural they needed to run a water line to the home
– lived nearly 400 miles from the clinic (one-way)
– were angry about being on dialysis and had conflicts with staff in-center
– had limited income and Medicare or Medicaid only
– lived alone and had to hire a “partner” [I suspect some dialyzed alone.]

The first dialysis clinic where I worked had 50% of its patients doing home dialysis (PD or home hemo) when I left in 1983. The medical director had trained in Seattle where home dialysis started. I don’t remember her rejecting anyone who expressed interest being screened out without the team making every effort to resolve any barriers. We had a terrific duo of home training nurses who were excellent educators and I believe they could train anyone to do anything.

I understand that a patient must demonstrate a willingness to learn, to follow instructions, and to take responsibility for his/her treatment and health. What other selection criteria do you have for home hemodialysis and what is the basis for using these criteria?

26

My selection criteria has nothing to do with the above mentioned. Patients who can not exist without benadryl, pt who think you can remove “extra fluid” for the week end that isn’t there yet, no matter how many times you explain it, the patinets who think the lower the blood pressure the better. These are typically patients who have been on dialysis many years and come from the old school of thought that if you feel better after dialysis than before dialysis, you weren’t dialyzed enough. There have been a couple of unfortunate incidences with home hemo patients with these habits that have killed themselves. One of the patients was a frequent no show and learned how to “forge” his treatment sheets. Another went into cardiac arrest because they sucked themseles dry trying to remove the “pre- weekend fluid”. There was also a patient, that thank god is still alive, found home hemo as a way to do illicit drugs more frequently, and overdosed. Sometimes we need to protect patients from themselves. Sorry, I guess “A few select” was extreme. :cry:

27

Be realistic, common sense…evaluation, who’s capable of caring for himself/herself? Who’s not? Pay attention to the selection process…were you phsycologically sound? Was a background check done before even letting you go home? It’s a critical process for a home training center to evaluate the potential patient. It’s not a FFA(free for all thing)…so be wary of this. Only capable patients are the ones who can go home, not patients who fail the criteria…

28

on 12/16/2005, Dori Said

“Actually, it’s a myth that centers are required to tell patients about all treatment options. In the ESRD Conditions for Coverage (the policy that governs dialysis care in the U.S.), it says that clinics must inform patients of the treatments that THEY OFFER. And nowhere does it say that they must tell patients where to get treatments a clinic doesn’t offer. Only 1/3 of all U.S. clinics offer PD, and only 1/10 offer home hemo of any type…”

Dori, it actually is required (by my interpretation anyway) for patients to be informed of all modality choices.

From the current ESRD Conditions of Coverage:
(here is the link: http://new.cms.hhs.gov/manuals/downloads/som107ap_h_esrd.pdf )

V187
§405.2137(a) Standard: Patient Long-Term Program
There is a written long-term program representing the selection of a suitable treatment modality (i.e., dialysis or transplantation) and dialysis setting (e.g., home, self-care) for each patient.

Interpretive Guidelines: §405.2137(a)
The long-term program presents the rationale for the selection/change of a modality for ESRD treatment.

V188
(1) The program is developed by a professional team which includes but is not limited to the physician director of the dialysis facility or center where the patient is currently being treated, a physician director of a center or facility which offers self-care dialysis training (if not available at the location where the patient is being treated), a transplant surgeon, a qualified nurse responsible for nursing services, a qualified dietitian and a qualified social worker. (I added the bold formatting)

From the Patient Rights section 405.2138

V221
(5) Are fully informed regarding their suitability for transplantation and home dialysis.

Survey Procedures and Probes: §405.2138(a)(5) (These are instructions to the surveyors)

There should be evidence in the record to indicate that patients were informed about their suitability for transplantation.
Ask patients what they were told about transplantation. Ask patients what they were told about home dialysis

Just above that statement is this one-

V218 – §405.2138(a)(2)
(2) Are fully informed of services available in the facility and of related charges including any charges for services not covered under title XVIII of the Social Security Act;

This may be what people look to to say they only have to inform the patients of their own services, but I think it is quite clear in V221 that facilities are required to inform patients about home options.

I have never heard of a facility that was cited for not informing patients about home hemo, but many facilities have been cited for not informing patients about transplatation as an option. Since both would be covered by this same regulation, I don’t see how they could be treated differently by a surveyor.

Curt

29

Jim, wow…I guess the law already is stting there and wonder whether home hemo option is not mentioned to any patients in some clinics as its just beginning to pickup mainstream, so maybe that’s why clinics being cited for not giving transplant option information is more common. Probably once more clinics get this viable information then there will be a result but again for clinics being cited for not giving transplant information then the same will happen for not giving home hemo information…unless there’s some evidence of information on PD that was not given… or in other words in-center vs transplant …its prolly a convenience for them not to send patients out to get a transplant…

30

I wasn’t aware that the current Conditions for Coverage (also called ESRD regulations) requires a physician from a home dialysis program to participate in decision-making about each patient’s care. This was added sometime between 10/2003 and 2/2005 when the most significant changes were proposed for the Conditions for Coverage since 1976 and when the community was asked to comment on this draft. The comment period closed 5/2005 and Medicare is now reviewing comments with a goal to publish final regulations by 2008.

For years the Conditions for Coverage have required that patients be informed of their candidacy for home dialysis and transplantation. The question is how is this done in clinics? Does the doctor tell patients what they should do or do doctors or staff give patients what they need to know to make their own decision? I wonder how many people have heard something like, “Mr. Smith, although some patients do their dialysis at home (or get a transplant), in your case, I believe in-center hemodialysis would be best for you because you’ll get your care from professionals here.” It would take a pretty assertive patient (and I suspect several post on this site) to push for something else.

In my correspondence with social workers, few of them have even seen the Conditions for Coverage and even managers have asked how to find them. Because of this, I’d be very interested to know just how many clinic managers know that they’re supposed to include a home dialysis physician on the team to develop the long-term program for every patient, how many do this, and how do they do it if the home training program is far away.

Medicare has been moving away from “process oriented” (how you did it) requirements and moving toward “outcome oriented” (how did it work) ones. Therefore, I’m not surprised to see that draft Conditions for Coverage published in 2/2005 proposed to eliminate the requirement that a home dialysis physician be part of the team to develop the long-term program. I hope that no matter whether the requirement is there or not, professionals will encourage people to consider a home therapy.

31

Beth writes:

For years the Conditions for Coverage have required that patients be informed of their candidacy for home dialysis and transplantation. The question is how is this done in clinics? Does the doctor tell patients what they should do or do doctors or staff give patients what they need to know to make their own decision? I wonder how many people have heard something like, “Mr. Smith, although some patients do their dialysis at home (or get a transplant), in your case, I believe in-center hemodialysis would be best for you because you’ll get your care from professionals here.” It would take a pretty assertive patient (and I suspect several post on this site) to push for something else.

I have been in 6 units including most of the major corporations. I think both patients and staff in these units would say that no matter what the sign on the building, the business practices are all the same. Despite the many nephrologists I’ve had, I have never once had one thoroughly advise me on my options and rights. I often have had to catch my breath while trying to stop the nephrologists from walking off before I can even form a question. I can honestly say, I have never had one of my nephrologists say, "Do you have any questions or concerns about your care today? And I have never on any occasion had one of my nephrologists ask “How pleased are you with the service you recieve here-is there anything you would like to see improved?”. So, it would be a very long stretch to say that nephrologists like this are advocates of optimum patient care. They know there are better choices for care and would want those better choices if it were them or a family member. Why then are they not proactive for patients?

Beth writes:

In my correspondence with social workers, few of them have even seen the Conditions for Coverage and even managers have asked how to find them. Because of this, I’d be very interested to know just how many clinic managers know that they’re supposed to include a home dialysis physician on the team to develop the long-term program for every patient, how many do this, and how do they do it if the home training program is far away

The Conditions of Coverage are the regulations for dialysis units. How brazenly unlawful is it for unit personel to not be aware of, and in compliance with, their own regulations! We hear about patient non-compliance, but what about corporation/unit non-compliance? Why are these matters not enforced? Never in my years of dialysis has a home dialysis physician been included on my long term care plan. Perhaps, as a group, we should address these issues with CMS?

32

I don’t know if any agency routinely sends the Conditions for Coverage to dialysis clinics. Finding them online takes some effort including knowing that new ones have been published, where to look, and what the legal citation is for them (42 CFR 405 Subpart U). By doing a Google search, I found the current Conditions for Coverage at http://www.washingtonwatchdog.org/documents/cfr/title42/part405.html (Find on page for subpart U to get to where the ESRD regulations start.)

Many years ago, ESRD Network in my area routinely sent copies of Federal Register notices that might be of interest to staff, including the Conditions for Coverage, notices about such things as changes in payment policies, disability policies, etc. Of course, this was when the number of clinics and patients were much lower than today. However, it seems like a good place to start to assure that clinics abide by the regulations without having to wait for a surveyor to tell them they have been cited for not doing something they should have been doing would be to make sure that every clinic gets a copy of the most recent version and updates as they are published. This could be done by state survey agencies or by ESRD Networks, both of which are Medicare contractors.

When the proposed regulation was published in February 2005, Medical Education Institute staff reviewed the lengthy document that included not only the proposed changes, but the rationale for them. MEI sent comments to CMS prior to the deadline. MEI sent its comments to key kidney organizations asking them to consider supporting them. Several organizations, including the National Kidney Foundation, American Nephrology Nurses Association, National Renal Administrators Association, and others included at least some of our recommendations with their own. You can read about the proposed Conditions for Coverage and request a copy of our comments from this page:
http://homedialysis.org/v1/rotating/0415topicofthemonth.shtml

Here are the all comments to the Conditions for Coverage that CMS received and posted on line – there are probably hundreds of them and some of them are repetitive because organization members sent their own copy of the organization’s comments.
http://new.cms.hhs.gov/eRulemaking/ECCMSR/itemdetail.asp?filterType=none&filterByDID=0&sortByDID=4&sortOrder=ascending&itemID=CMS013356

33

Would be interested to know if U.S. patients/caregivers at this board participated in sending comments re: The Conditions for Coverage? I know we were all informed of the comment period.

Do you get involved at the political level, either alone, or with a patient organization? Or do you think the system is so corrupt, that trying to effect change is an exercise in futility so just opt to protect yourselves the best you can through getting into home programs?

34

I think that some of those in-center clinics that are not doing a professional job are in business without preparation, knowledge, resulting in these kind of problems. That’s very bad, not good.

That’s where consulting services like the one Jim Curtis runs comes in, so based on my findings it should be required by law, if not exists that a starting dialysis center should acquire consulting services before even opening a clinic…

So if you have alot of social workers who haven’t even seen these conditions of coverage then how would patients get the information they need? …and it seems eveyone points fingers…who the heck suppose to give out this information? Social Worker? Doctor? Head Nurse?..in my opinion, if owner doesn’t want to give out the info then everyone working in that center will not give it out, so it seems the more dominant figure has an influence on the rest…

or is it simply mis-informed…something really has to be done, there’s a flaw somewhere in the system, but remember what I am trying to say…some of the clinics, not all

35

We’ve posted the proposed Conditions for Coverage on this website and on listservs where patients and professionals post messages. Here’s the link to them…all 72 pages:
http://a257.g.akamaitech.net/7/257/2422/09feb20050800/edocket.access.gpo.gov/2005/pdf/05-1622.pdf

The comment period closed in May 2005. Before they closed several patients and family members of patients submitted comments to Medicare with their dialysis experiences. I hope that the final regulations will incorporate their comments. You can use the link to the comments that I provided before. The comments from patients are mixed in with comments from doctors, nurses, technicians, dietitians, social workers, pharmacists, dialysis corporations, and nonprofit organizations.

36

This is actually part of the original (which are, of course, the current) CoC, dating from 1976. It is in section 405.2137 in the link Beth provided in her post.

I am guessing that as home dialysis became less prevelent in the late '70s Medicare stopped being as concerned about it. Since transplantation saves Medicare money, they continued to focus on that.

Curt

37

Wow, Curt! You made me find and re-read my old copy of the original 1976 regs. It does say that the long-term program is developed by a team that is not limited to the physician director of the center where the patient is being treated, a physician director of a center that offers self-care training (if not available at the center where the patient is being treated), a transplant surgeon, a qualified nurse, a qualified dietitian, and a qualified social worker. I wonder when that requirement was omitted. I’m thrilled to see it back again and hope it stays in the final regulations that are being updated now…especially if it is enforced.

Transplantation saves lots of money because after the surgery itself, Medicare only pays for a stable patient’s anti-rejection drugs and some MD follow-up and only for 36 months unless the patient gets Medicare due to disability or age 65 or older. However, home dialysis saves Medicare money too. Medicare doesn’t seem to grasp how much savings are possible or doesn’t know how to incentivize home dialysis in other ways than it already has –
– waiving the Medicare waiting period to incentivize patients
– paying doctors up to $500 for each patient trained to do home dialysis to incentivize doctors
– paying the same amount weekly for home dialysis as for in-center dialysis and paying $20 a home training session to incentivize clinics
It takes a year or longer (depending on the number of home patients in a program) of having a patient on conventional home hemo to make up the higher training and set up costs. In my opinion, this latter “incentive” needs to be updated to encourage widespread growth in home hemo programs.

USRDS 2005 Annual Data Report – Medicare primary payer costs per patient (Source: http://www.usrds.org/2005/ref/K.pdf):
– Hemodialysis - $64,614 (includes in-center and home)
– CAPD/CCPD - $47,384
– Transplant - $22,142
Medicare spent over $16 billion to treat 395,371 patients with kidney failure in 2003:
– $6.1 billion was for inpatient care
– $3 billion was for outpatient hemo (includes in-center and home)
– $2.2 billion was on Medicare covered drugs
– $227 million was for outpatient PD
– $785 million on skilled nursing, home health, and hospice
– $3.4 billion on physicians of which $448 million was for monthly MD fees and $56 million was for MD home dialysis fees

Unfortunately, the United States Renal Data System that tracks all kinds of renal data doesn’t separate per patient costs related to home hemodialysis from per patient costs related to in-center hemodialysis. If they were reported separately, we might see savings that aren’t as obvious in the combined total.

If anyone read this before I revised the numbers, thanks Bill for making me look at the numbers again – it’s billions not trillions.

38

I’ll need to catch up when I get home and remember my password but Beth I really wish you could change the Billions to Trillions then maybe Medicare would pay for dialysis abroad :slight_smile:
Billp

39

Hey Bill, we miss you! Hope you have a bunch of pictures to share with us! :smiley:

40

Beth writes:

Wow, Curt! You made me find and re-read my old copy of the original 1976 regs. It does say that the long-term program is developed by a team that is not limited to the physician director of the center where the patient is being treated, a physician director of a center that offers self-care training (if not available at the center where the patient is being treated), a transplant surgeon, a qualified nurse, a qualified dietitian, and a qualified social worker. I wonder when that requirement was omitted. I’m thrilled to see it back again and hope it stays in the final regulations that are being updated now…especially if it is enforced
.

“Especially if it is enforced”- this seems to be key. Skimming over the comments for the Conditions of Coverage, one comment stood out to me. It is from the AAKP:

AAKP believes that conditions/standards and measures are only as effective as surveillance and enforcement. In 2003, Senator Charles Grassley and the General Accounting Office advised CMS on deficiencies in State survey and certification for dialysis facilities- and AAKP asks how much progress CMS is making in addressing those concerns.

The majority of staff of every dialysis unit I have been in cut corners. Any way they can take short cuts, they will, even if it puts patients’ health and lives in jeopardy. With some, especially in management, this behavior is with full knowledge of the consequences to patients. In other cases, staff are given incomplete training and they do not know what they are inflicting on patients.

There are existing regulations on paper, but they frequently are not enforced resulting in diminished quality of life, hurt and loss of life to patients. The ESRD program is a rather lawless entity. Unless one’s state has a very organized patient/professional group that combats the violators, and few states do, it is a free for all for units to get away with all they can with CMS’s blessings. I say this, because CMS has never designated neutral agencies one can contact to address patients’ grievances- there are no safeguards built into this system for patient protections.

It seems the best advice for someone with kidney disease is to get as much education as one can and run for your life out of the unit to home txs.! Even once home, one is not totally safe. Units change hands, policies change. It is always a fight for better care. Until there is a true grievance system to ensure quality patient care across the board, there will be delays resulting in diminshed life and loss of life.