DaVita

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

Guest posted:

Gus do you consider yourself on the payroll of Davita Patinet Citizens?

I am not sure what this message means. Gus mentioned DaVita Patient Citizens as a patient advocacy group along with Dialysis Ethics. Letting people know about a group shouldn’t be interpreted as being “on the payroll” or beholden to a group. Please clarify so people posting to these message boards will feel free to share resources that they have discovered without worrying that someone will question his/her motivation. If you hear about an organization that you have never heard of before, evaluate each one using your own criteria for that organization or website may be worthy of more attention.

As time has gone by, several patient advocacy groups have formed. In addition to DaVita Patient Citizens and Dialysis Ethics, other advocacy groups I’ve heard of include (in alphabetical order):
– American Association of Kidney Patients
http://www.aakp.org
– National Kidney Foundation’s People Like Us Advocates

– Renal Support Network

– The Kidney Advocate/Maryland Patient Advocacy Group
http://www.kidneyadvocacy.50megs.com/Firstpage.html

If anyone knows of others, please let us know.

Guest posted:

What does is take to be a partner of dailyhemo?

At this point, the primary way to advocate for more frequent hemodialysis is to write your legislators and get everyone you know to write too. There is a bill in the House (H.R. 5321). There needs to be a companion bill (the same bill) introduced in the Senate. This would improve chances that the legislation will be included in a Medicare bill before the session of Congress ends at the end of this year.

Another way you could support the legislation is to contact every patient advocacy group and encourage them all to support this legislation.

22

DaVita Patient Citizens is non-profit and has nothing to do with Davita Inc…what I like about them is that its run by patients only…I admire those kinds of groups that are run by patients. If you look around their site you’ll notice you can become a member. Its open to pre-dialysis patients, dialysis patients and their family members, regardless which clinic you go to…also take a look at how involved they’re in advocating for a better future for dialysis patients. :smiley:

23

On the DaVita Patient Citizens site it says:
The current name of our organization includes the name “DaVita” to make clear that we were founded and thus far solely funded by DaVita Inc. – we do not hide that fact. However, it is our intention to remain independent of DaVita in every way, including in our governance, formulation of policy and actions. To that end, most of our Board members are dialysis patients.

You can read a brief biographical statement about the members of the DPC board. The board includes 6 CKD or ESRD patients and 4 renal professionals, one of whom has CKD also.
http://www.dialysispatients.org/board_of_directors.cfm

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Guest posted: Quote:
Gus do you consider yourself on the payroll of Davita Patinet Citizens?

I am not sure what this message means. Gus mentioned DaVita Patient Citizens as a patient advocacy group along with Dialysis Ethics. Letting people know about a group shouldn’t be interpreted as being “on the payroll” or beholden to a group. Please clarify so people posting to these message boards will feel free to share resources that they have discovered without worrying that someone will question his/her motivation. If you hear about an organization that you have never heard of before, evaluate each one using your own criteria for that organization or website may be worthy of more attention.

As time has gone by, several patient advocacy groups have formed. In addition to DaVita Patient Citizens and Dialysis Ethics, other advocacy groups I’ve heard of include (in alphabetical order):
– American Association of Kidney Patients
http://www.aakp.org
– National Kidney Foundation’s People Like Us Advocates
Advocacy | National Kidney Foundation
– Renal Support Network
http://www.rsnhope.org/
– The Kidney Advocate/Maryland Patient Advocacy Group
Kidney Advocacy Home Page

Most groups that bill themselves as patient advocacy groups really are not patient advocates in the truest sense of the word. To a dialysis patient who is in need of direct advocacy, because his rights are being disrespected in the unit due to unit violations, a call to most kidney organizations will not lend him any direct support.

Most of these groups are industry supported which is a conflict of interest “if” they say only what their industry supporters allow them to say. And most of the groups seem to have higher reimbursements for the dialysis industry as their #1 goal for supposedly solving the ills of the units. Speaking for myself, personally, I do not believe higher reimbursements are deserved until the industry manages itself better when it comes to patient care and until patients can file grievances in every state without fear of retribution.

It would be good if we could distinguish which groups provide direct patient advocacy and which do not, because there are violations galore in many dialysis units, the networks and state are not doing their job across the board and true patient advocacy is urgently needed in the lives of many dialysis patients throughout our country.

25

The following is DaVita Patient Citizens policy on individual patient grievances. Here we have yet another group directing patients to their network. They even state “if you do not feel that your issue is being resolved, or you fear retaliation…” Why would this language even be used if there was not a significant problem?

Individual Patient Grievances
Because DaVita Patient Citizens is a nationwide organization, we focus on issues affecting the majority of patients and do not deal with individual patient grievances.

We do, however, think it’s important that your individual grievances are addressed. In general, we have found that individual patient grievances can be handled in the following manner:

Ask your center for a copy of its Patient Grievance Procedure

Discuss your grievance with your center’s Facility Administrator and/or Medical Director

If you do not feel that your issue is being resolved, or you fear retaliation, contact your local ESRD Network (usually listed on the Patient Grievance Procedure or visit www.esrdnetworks.org)
As a patient, you have the right to have your grievances handled promptly and courteously. We hope that this information helps you take action to voice your individual concerns.

26

Beth writes:

On the DaVita Patient Citizens site it says:
The current name of our organization includes the name “DaVita” to make clear that we were founded and thus far solely funded by DaVita Inc. – we do not hide that fact. However, it is our intention to remain independent of DaVita in every way, including in our governance, formulation of policy and actions. To that end, most of our Board members are dialysis patients.

Is this considered ethical? Will the name DAVITA Patient Citizens remain? How many of the board members are associated with DaVita?

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Jane, This is the same policy of any unit; they all have a grievance policy that directs pts. to solve problems if they can by going through the proper channels in the unit and company levels. That way most problems are squashed like a bug before ever being adequately addressed. Happened to me twice already, and then the second time was told “it’s been a year, you should be over this”. That is why those who can do home hemo, and have it available to them should look into it. Lin.

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Lin,
Have you ever gotten adequate counseling for the abuse you suffered…how have you dealt with it? I have experienced or witnessed every type of abuse in the units except that of a sexual nature as in your case. I hope you find total healing from your situation and that more ppl would realize how broken the grievance system is and get involved.

29

Gus:

Jane, I know what your saying but what good does it make beeing a patient pointing fingers all the time? It just makes things worse…
Probably the most educated patients would be good candidates for home dialysis no? On the other hand take a look at this…
http://dialysispatients.org

Jane:

Gus, I am not going to go away on this topic of units that are harming patients/ cutting patients lives short through purposeful, illegal unit violations. I can only hope that more patients/staff will find the courage to join with me to continue to expose what goes on and to find a way to force such companies to become accountable, since they refuse to become accountable willingly.

Jane, Unfortuanately the hand washing infection control issue exists in every unit. I am a home hemo patient with daVita for many reasons(work school life in general and taking nosocomial infections out of the equation?) However, I do vacation frequently and I have to go in-center. I also am very nit picky about infection control. who wouldn’t be? If I notice a tech or nurse coming at me with unwashed hands,glove touched garbage can etc. I politely ask them to please wash your hands before working with me. (not that I should have to) But after all, I can only really be responsible for my self. And about educating patients-remember, alot of patients are from the WW-II era and they really do not know any better and always believe the caregivers know everything and are doing everything by the book. Now with the baby-boomers and gen-x, this is the information age and they ask more questions and want better results. So anyways, DaVita has a compliance hotline. call them I have called them before about a unit that had the biggest group of infection spreaders I have ever seen. The next treatment I went in and the Regional director and the regional Vp were there. I followed up with my complaint and every teammate was given a write up in their employee file and inserviced. I had three more treatments after my complaint and the unit had really improved. So the systems they have do work.
samantha

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Jane, I realze these things go on in dialysis units, they are teriible. But, you sound very hostile and maybe the caregivers at the unit don’t like dealing with your problems because they are scared of you. Remeber, there are no victims, only volunteers.-bragabon

31

Jane, At first I would shake and have a hard time even going into the unit. I often thought to myself see, if I were on home hemo at the beginning when I wanted to be this would have never happened. Of course it wasn’t why I wanted home hemo; I could never have imagined something so disgusting could’ve happened in a dialysis unit. I got no councelling; I’m sure no one really believed. They just appeased me because they didn’t want the info. getting out and that is why they told me over and over “sorry but nothing can be done because you have no proof and he denies it vehemently” I even got a letter from corportate to that effect.
My “therapy” has been to face up and go into that unit knowing he is there. I can now walk right past him; sure my bp goes up, but I don’t have the feeling that I need to run outta there so often. In a weird sort of way him being there has been therapy. I really hate the way everyone staff and pts. alike think he is a saint though; that hurts, and I know from my work experience that all too often the pt. is the one who is thought to be the problem, never staff. I thought at least they wouldn’t let him near any female pts. but they do and that sais to me that I wasn’t believed; if they did I should think they wouldn’t be so stupid as to let something happen again. No one cares as long as there is no proof!
I don’t want to add to the unit bashing. I just know things happen and that I’ll be safer at home. I have some really great people taking care of me and I don’t want to cast a shadow on their care; I just want to be in a safe situation. I don’t even want to be witness to all the crap that goes on behind the scenes. It will be lots of work and time between training and such but I have to do home hemo if for no other reason, feeling better whatever, I need to protect myself and my sanity. Dialysis is stressfull enough, add to that everything else with family ect… but I just don’t need anything going wrong in the unit. They are supposed to be taking care of me, not advantage of me. Lin.

32

Samantha:

Jane, Unfortuanately the hand washing infection control issue exists in every unit. I am a home hemo patient with daVita for many reasons(work school life in general and taking nosocomial infections out of the equation?) However, I do vacation frequently and I have to go in-center. I also am very nit picky about infection control. who wouldn’t be? If I notice a tech or nurse coming at me with unwashed hands,glove touched garbage can etc. I politely ask them to please wash your hands before working with me. (not that I should have to) But after all, I can only really be responsible for my self.

Samantha, I do not believe that patients should have to constantly be on their guard to ask staff to please wash their hands. It is not that staff forget, but that management does not train them to know the rules of infection control and does not enforce handwashing and numerous other patient care protocols.

Samanatha:

And about educating patients-remember, alot of patients are from the WW-II era and they really do not know any better and always believe the caregivers know everything and are doing everything by the book. Now with the baby-boomers and gen-x, this is the information age and they ask more questions and want better results.

It makes me especially livid to see vulnerable, elderly patients taken advantage of who are innocent and trusting. I see these little old ladies and men every tx., someone’s grandma or grandpa, totally unaware that the tech has just touched the garbage can, as you say, and then is working on their access. They are in and out of the hospital with infections, access problems etc. Not only am I concerned for my safety- I am my brother’s keeper and do care about theirs.

Samantha:

So anyways, DaVita has a compliance hotline. call them I have called them before about a unit that had the biggest group of infection spreaders I have ever seen. The next treatment I went in and the Regional director and the regional Vp were there. I followed up with my complaint and every teammate was given a write up in their employee file and inserviced. I had three more treatments after my complaint and the unit had really improved. So the systems they have do work. samantha

I am glad to hear that you got results as a result of calling Davita’s compliance hotline, although you say you were only there for 3 more txs and are in home hemo now so don’t know if the violations ceased for good. Again, however, from what I observe in dialysis, I do not believe it is the floor staff who needs the repimand- rather it is the upper management who does not see to it that staff are trained competently and does not strictly enforce infection control and the numerous other protocols for safe, patient care.

I was with a different company and did not get results when a group of patients brought our concerns to the mangement. Instead, we got harassment. So, from this experience, I do not believe patients should have to be in the position to police units and I am working to make sure patients have full protection from harassment and/or “dumping” when they bring legitimate grievances.

You were able to get out of the unit into home hemo where you are no longer directly affected by what goes on in the unit. Patients who must dialyze in-center deserve safe, competent care.

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Guest :

Jane, I realze these things go on in dialysis units, they are teriible. But, you sound very hostile and maybe the caregivers at the unit don’t like dealing with your problems because they are scared of you. Remeber, there are no victims, only volunteers.-bragabon

I do not consider myself as hostile, but I am assertive. I am always polite to staff. I know that they do not realize the procedures they are fowling up when it comes to infection control and other protocols as they have lacked training and oversight from management, thus have wrong concepts in how to deliver patient care. Some staff do fear me, but the fear does not come from my treating them disrespectfully or cruely, but in their being afraid because they are so unsure of themselves in their job. The way they were trained is lacking, and when a patient such as myself who is awake and alert to the steps they are skipping speaks up, although politely, they are freaked out. The patients who lie there comatose are much less non-threatening to them.

Depending upon the unit staff, because they are all different, some respect me very much for being an educated patient and some are insecure around me. The insecurity is not caused by me- no staff would have to feel insecure if all were trained competently and supervised well.

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Lin.,
I hope everyone who reads this board will take heed to your story. Whether dialysis patients are abused mentally, physically, emotionally or sexually it is traumatic. Mismanaged, dysfunctional units are breeding grounds ripe for abuses of all kinds. These offenses would not occur at the rate they do if there was proper oversight.

Lin. your situation brings out how lawless some dialysis units are. You have exhibited the strength to face your abuser and to find a course of action to get yourself to safety via home hemo. I have known many other patients who were not as strong who were swallowed up by the unit abuses and succombed to hurts and premature death, literally.

It should not be necessary for educated patients to escape from the units in order to get good care. Even once in a home hemo program one still has to deal with the unit policies and personel. The sooner everyone does their part to bring about a better system, the better it will be for everyone.

35

Jane, As much as I know, no matter how educated I was, even I totally underestimated how vulnerable one can feel when needles are in your arm and you are getting a dialysis tx… Yes, I am a very strong person, or I couldn’t go back there at all; once I found out they were going to offer home hemo with the Nxstage machine I wasn’t about to leave. Then a nurse came on here from another unit offering it and told me if things didn’t look up I could come to the unit she’s at for training. If you hang in there long enough the sun will shine. I know I’m strong, but I wish I could help get all the others who need to, get out of the units. Yes, there are many good staffers, and I’ve known more than a few; it’s the unscrupulous ones that concern me. I can’t fight them but I can do home hemo and inspire others to do the same. After all, it’s people like Marty and all here plus Ridgerunner and Jfwag who knew I needed help and inspired me! I think you should do the same. It’s the only way to fight things. Lin.

36

This is not the first time I have seen comments in this vein. I assume you’re referring to HR 1298 and S 635 which would create a frame work for an inflation update to the composite rate … among other features.

I have lobbied early and often for inflation updates. Inflation updates are not increases in reimbursement. By definition an inflation update restores the value of the composite rate. When dialyzors oppose inflation updates they are working against their self interest. Every day inflation eats away at the value of the support we receive from Medicare, unless the value of that support is restored there is less money available for services. It seems pretty straight forward to me.

I wonder what has been forgone because providers have to plan for year to year inflation cuts?

Groups like the RSN are fighting for 1298 and 635. This is how they earn their place at the table … when we finally get an inflation update framework, like every other Medicare provider, RSN will have earned their place at the table and we’ll be able to move forward on other issues. Groups like the aakp who do not take positions on reimbursement issues are less relevant by the day.

Before I can go to DC and advocate for something there has to be legislation – what legislation would you propose to balance the relationship between dialyzors and staff?

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Hi y’all,

I have lobbied early and often for inflation updates. Inflation updates are not increases in reimbursement. By definition an inflation update restores the value of the composite rate. When dialyzors oppose inflation updates they are working against their self interest.

Good point, Bill.
– In 1973, when the Medicare ESRD Program passed, average dialysis reimbursement was $138/treatment (and 40% of patients dialyzed at home, vs. about 8% today).
– In 1983 when the composite rate was implemented, it was $130–so some ground had already been lost.
– In 1986, the Omnibus Budget Reconciliation Act reduced this payment by $2 for both 1987 and 1988!
– In 1990, it was increased by $1.
– In 1999, there was a 1.2% increase granted by Congress (each change to dialysis reimbursement requires a law)
– In 2002, the average composite rate was $130.50
(Note: All of the figures and dates above come from this article: Lockridge RS. The direction of end-stage renal disease reimbursement in the United States. Sem Dial. 17(2):125-130, 2004)

What’s wrong with this picture? As Dr. Lockridge points out:
“The average reimbursement per treatment for independent outpatient dialysis units in 1974 was $138; in 2002 the average reimbursement per treatment for independent outpatient dialysis units was $130.50. In constant dollars, using the [consumer] price index, the reimbursement per treatment for dialysis has decreased from $138 per treatment in 1974 to $34 per treatment in 2002.”

The decline of dollars available to pay nurses is directly responsible for the increased use of unlicensed personnel (techs) in dialysis centers. For-profit dialysis companies are businesses that have to project earnings and report profits and losses to Wall Street, and with fixed payments (that lose money each year) from Medicare, the industry has to cut back on more costly staff to stay profitable. Right now, the higher payments made by employer group health plans (EGHPs) are what keeps the dialysis industry afloat–and only 24% of working-age patients keep their jobs (and health plans) once they start dialysis. [Hmmm. And 91% of U.S. patients do in-center hemo; the least work-friendly option. Go figure.]

Technician training varies considerably–some techs are excellent, others are subpar. About 11 states require tech certification; the rest don’t. Nurses may have training ranging from a 2 year college program to advanced practice training with graduate degrees. In general, though, more nurses = better care. But dialysis must compete with hospitals, nursing homes, public health, industry, schools, etc. for scarce nurses–and centers’ hands are tied when they can’t pay more money or hiring bonuses.

Bill is right that supporting bills like HR1298 and S635 is one of the best ways to help improve the care in dialysis centers. This is one reason why many groups, including MEI, have been working on behalf of these bills.

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Has everyone read HR 1298 and/or S 635? There are multiple provisions of the legislation that get lost in the debate about the annual update. Here are the sections that I copied for S 635 (HR 1298 is identical).

Beginning
March 16, 2005

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
Sec. 1. Short title.
Sec. 403. Establishment of an End-Stage Renal Disease (ESRD) Advisory committee.
TITLE I–RECOGNIZING AND IMPROVING QUALITY FOR PATIENTS

SEC. 102. DEMONSTRATION PROJECT FOR OUTCOMES-BASED ESRD REIMBURSEMENT SYSTEM.
SEC. 103. REQUIRED TRAINING FOR PATIENT CARE DIALYSIS TECHNICIANS.
TITLE II–ENSURING QUALITY THROUGH IMPROVEMENTS IN THE ESRD PAYMENT SYSTEM

SEC. 201. ESTABLISHMENT OF ANNUAL UPDATE FRAMEWORK FOR THE MEDICARE ESRD COMPOSITE RATE.
SEC. 202. EXTENSION OF MEDICARE SECONDARY PAYER.
SEC. 203. GAO STUDY AND REPORT ON IMPACT OF G-CODES.
TITLE III–IMPROVING QUALITY THROUGH PATIENT EDUCATION, ACCESS, AND SAFETY INITIATIVES

SEC. 301. SUPPORT OF PUBLIC AND PATIENT EDUCATION INITIATIVES REGARDING KIDNEY DISEASE.
SEC. 302. MEDICARE COVERAGE OF KIDNEY DISEASE PATIENT EDUCATION SERVICES.
`Kidney Disease Education Services

SEC. 303. BLOOD FLOW MONITORING DEMONSTRATION PROJECTS.
TITLE IV–IMPROVING QUALITY THROUGH IMPROVED COVERAGE

SEC. 401. IMPROVING THE HOME DIALYSIS BENEFIT.
SEC. 402. INSTITUTE OF MEDICINE EVALUATION AND REPORT ON HOME DIALYSIS.
SEC. 403. END-STAGE RENAL DISEASE (ESRD) ADVISORY COMMITTEE.

Getting Medicare funding for education would make me tremendously happy. This legislation would fund education of the general public, people with kidney damage, and people with kidney failure and would require a standardized curriculum of multiple topics be developed for people with kidney failure and suggests the qualifications of those providing education. This could help more patients learn how to protect themselves from the things Jane has voiced concern about.

The bill also requires a level of dialysis technician training and requires certification. I have to believe that if technicians were better trained and had to pass a certification/competency exam, it would lead to improved care in dialysis clinics. Trying to get technician certification in each state is possible but doing it in one bill would save a tremendous amount of time.

This legislation would also require the Institute of Medicine to do a study and report on home dialysis looking at barriers, incentives, disincentives, patient education about home dialysis, etc. In my opinion, what the government could learn from a thorough study of home dialysis could help to further its usage.

I don’t see a single reason not to support this legislation.

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Bill:

Before I can go to DC and advocate for something there has to be legislation – what legislation would you propose to balance the relationship between dialyzors and staff?

The current bills sound like more rhetoric to me. The issue is, units should be paid fairly for the job they do with annual increases “IF” they really do the job! Without effective oversight we have violating units in every corporation and privately owned, in every state!!

One sees nothing in these bills re: effective oversight. Just more promises to do what they should of been doing all along! So, in answer to your question, I would say that legislation is needed to address oversight and the fact that most patients in our ESRD system are not told about the grievance system, or for those who do find out about it, feel that they will be retaliated against if they file a grievance.

Is the lack of annual increases the reason why dialysis staff are incompetently trained and why patients are denied education? I don’t think so. Who ever heard of a medical discipline that does not require a serious degree proving proficiency?! Where but in dialysis can barely by the seat of their pants staffers get out on the floor to work on patients when they have not sufficiently been educated in the principles of kidney disease and dialysis and know essentially nothing about the human anatomy?

Well this bill speaks about certification of techs- not sure if this means incoming techs or ALL existing techs. Because we have a lot of existing techs (by techs I mean pcts and RNs) who never were sufficiently educated. Who will do the certifying? How intensive will it be?

If this bill will provide for home txs that is certainly a good thing. But the whole point is, as I see it, it is a shame that patients must escape to home programs because units are so poorly managaged, one must get out in order to be safe. This industry has a poor report card and I don’t believe it’s due to the lack of raises, but to poor oversight. Legislation re: oversight is what I would like to see.

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Not sure we need two threads going on 1298.