Rejected for Dialyzing Alone: Naming Names

By Anna Bennett  Renegade Dialysta

I've been very public with my CKD-5 journey, I've done press for DaVita and NxStage, I've been a strong advocate for home hemo, and for the past 10 months, I have thrived.  I feel better, my labs are fantastic, I am at the top of my game, working full-time, dialyzing alone at home, and waiting for a transplant.  Which is a far far place from where I was last year when I was in-center, receiving minimal dialysis, simply shuffling through the poorly designed system that is our current in-center model.  I vow to never go back to a zombie like, underdialyzed existence.   Recently, an unfortunate chain of events has placed my medical care in uncharted waters (literally).

There has been a convergence of Topeka, and Lufkin, and this week, it dropped right on me.  I've decided to go public with this and I'll be blogging my first hand experience, just as I blogged my NxStage training.  Bill coined a name for me, Renegade Dialyista.  I like it.  People don't wake up in the morning deciding, today I will be an advocate. I really didn't want this, I was happy, a good, compliant patient Dialyzor.  I have  (oops - had??) a great relationship with my Nephrologist and my training Nurse.

Rosa Parks wasn't looking for trouble.  She was a victim of a terrible injustice, and she made a stand for her civil rights.  Well, DaVita, I won't be sent to the back of the bus.

Some background:  In the 1980's my plan was to finish college and go to medical school.  With that pursuit in mind, I secured a college part time position working for Dr. Nina Tolkoff-Rubin at the Massachusetts General Hospital.  For the years that I was there, Dr. Rubin served as a boss and role model.  She, as Director of the in-center and home dialysis programs and her staff were shining examples of class, competence and professionalism.  I learned so much as an employee there, that now, 20 years later it still stands as my benchmark for running a medical practice and Dialysis unit. 

Also in preparation for a career in medicine (that was not to be), I completed an academic and clinical course to be an Emergency Medical Technician at Northeastern University.  I did very well there, and even though I never practiced the trade that I learned, that knowledge has been put to good use.  I ended up not going to medical school, but I did end up on dialysis, and I feel that my past experiences prepared me for surviving CKD-5.

Here is my story (so far):

As of Friday 8/15, my dialysis clinic DaVita Life Care Dialysis voluntarily closed to update and revamp.  (Read between the lines on that one people).  That Friday, I was called by my nurse with the news, and assured that she would be working out of a related unit here in NYC.  I was fine with that, I am on home hemo and I had just had my monthly clinic visit - I foresaw no real disruption, surely the violations kinks would be worked out soon.

Imagine my surprise when DaVita Columbia clinic called me on Monday morning to tell me that they were now responsible for my care, and that I needed to come in immediately for a clinic visit as a new patient. Other than the phone call on Friday telling me that my nurse was to be temporarily working out of the DaVita Columbia Unit, there has been no communication as to who was caring for me, my 20 month relationship with DaVita Life Care, along with my six year relationship with my nephrologist (the medical director at LifeCare) had been instantly severed, and I was dumped on DaVita Columbia.  That in itself is a violation of trust, and shakes your confidence in your medical care to the core.  The events that transpired following my initial dumping did nothing but affirm these negative feelings.

From the stock questions (who is your partner? bring in your meds, the real bottles, do you need a ride?) that the caller was asking me I know that all they knew of me was my name and phone number. When I answered "I dialyze alone, I was trained alone", the reply "oh, we don't take single home hemo patients". The subsequent phone calls were the same, "we don't support dialyzing alone, you'll have to come in-center".

There is no medical care involved in these transactions, the unit didn't even have my chart.  My nurse was no longer my nurse, there was no rounding (not a Herculean task for my center's 7 at home people - how long could it take to round on 7 patients before you start cold calling them?)

Home hemo patients in general are trained to be self-reliant and are as a whole, stable. As there has been no chart or history review in my case, this proves that medical care is not the primary objective here, billing is. What was the rush I am stable and had just had my monthly clinic visit 4 days prior?  As we all know, time is money.

If Lufkin has taught them anything, DaVita should have learned that there should be proper training and procedures in place in the event of an emergency transfer of patients.  An established home hemo patient (actually any patient) deserves respect, respect in knowing that a unit is putting their health as the first priority, respect in being told that there is a time line and continuity on their care plan, and that respect would instill trust.  No trust was earned by DaVita Columbia with these random phone calls, ignorance, and blatant disregard to my situation - the same situation which was not only encouraged, but supported and promoted at my former unit (a DaVita unit).   You know what they say about first impressions - you only get one chance to make one.

I was really conflicted with going public with this.  But I am going to take a stand,  I am within my rights to maintain the quality of care that I have had for the past 10 months while on home hemo.  As of my last monthly clinic visit (8/15) my labs are consistently great, my overall health is amazing, and Davita Columbia in NYC want me to go back in center for minimal 3 times a week dialysis - with no regard to my overall health and well being and no respect for the care plan, training and aptitude that I have shown over the past 10 months as a solo home dialyzor. 

I was told by the DaVita FA at Columbia during a phone call that the exclusion of solo dialysis on NxStage was not a policy, nor is it a State Regulation, it is simply the decision of the MD who writes the orders, a man who has never met me, never read my medical chart, and has no regard for my established standard of care.  (This statement was later corrected when the FA found their old certification for Fresenius at home which does have a solo exclusion - I do not know if their NxStage certification has that exclusion, but I know that my old unit's did not)

In my opinion DaVita Columbia is still operating in the stone age, and is miserly promoting minimum health at maximum profit. This is not practicing medicine, this is setting uninformed arbitrary rules to keep the scary lawyers away, all the time staying entrenched in the clincally proven suboptimal dialysis model of 3x a week. My question, are they billing for not providing me with care?  Only time and my insurance statements will tell.  (I'll be sharing that with you as well)

In all of this criticism, I have to say that I had a long relationship with my home clinic (the one currently "re-vamping") I had total respect for my Nephrologist (who no longer takes my calls) and my Home Hemo Nurse(who no longer has anything to do with my care). The ball was dropped on this so badly.  There was no communication, no explanation, no respect.  As a final act of trying to starve me into submission, I was told that my supplies would be stopped and when they run out, I could either go in-center or look for another unit. 

Why was this dumped on MY lap?  I am now the person scurrying to find support? I blame DaVita Management for creating this climate. What a sad, sad testimony for Dialysis Units.  Today, I am a number in a chair. I am betrayed, insulted and I have no faith in the industry, and am faced with DaVita's deadly embargo on my dialysis supplies.

On a final note for today's post, as I write this, it is day two of a surprise visit by the New York State Department of Health to the DaVita Columbia Dialysis unit, so it wasn't just my old unit that has been scrutinized, the staff at DaVita Columbia should be sweating a bit as well. 

Comments

[Miz Flow]

..I sit here and read this with my jaw on the ground. I'm speechless.....I just don't know what to say.

What are you going to do??

[Anna Bennett]

When I first heard that I was no longer being seen by my health care team and that my dialyzing at home was threatened, I was stunned, and my jaw dropped as well, then I was angry, then sad, now I am back to angry yet focused.

Even though I live alone, I am not alone. I have support in this, and the security of knowing that things will work out, it is just going to be a lot of work that I wasn't planning on.

[Melissa Darnley]

Anna this is incredible. It makes me so mad and I wish there was something I could do for you down here in Australia. There is nothing worse than just to be treated like you don't exist and are just another number when you know damn well what the best care is for you and what will ultimately keep you fit and well longer. Thinking of you. Will let Australian Dialysis Buddies know of your situation so we will all be thinking of you on the other side of the world.
Cheers
Mel

[Roberta Mikles, RN Patient Advocate]

Anna: First, you are courageous to bring your situation forth as many are only too aware that the fear of retaliation is 'alive and well' in many facilities throughout the United States. What happened to you, should not happen to anyone, and I am sorry you have to experience such. As was stated in one government report, (2003) -unless information is brought to the public, often situations go unnoted by all, including our elected officials, who might not be aware of less than quality safe care conditions. Perhaps it would be interesting to learn, from obtaining a copy of the survey, why the facility closed? It is imperative, for quality of life, that those who can dialyze at home do so with support of providers.
Please keep updating us. Your courage will support others to also come forth with problems they are experiencing.
Roberta Mikles RN Health Care Patient Advocate
rmiklesrn@aol.com

[Rich Berkowitz]

Anna, this is a total travesty of justice and a violation of your civil rights. Dialyzors should have the right to choose the modality best for them — no ands, if, or buts. Since you've chosen to make this public, why not call the ACLU and press your case with them. I know for a fact that NxStage does not require a partner — it's the clinic if anybody. I also know that Wellbound has a specific procedure for allowing dialyzors to treat alone. It seems that Davita does it to cover their own butts regardless of what's best for the patient.

It also seems that DaVita has dug itself a hole. Davita is one corporation — each center does not stand alone. Even if New York has certain requirements, Davita has a problem. The fact that you were allowed to dialyze at home with the approval of another Davita clinic in the same state not only sets precedence that Davita allows it, but also can put them in hot water in that they violated the law by allowing you to do HHD alone. It seems to me they have put themselves in a pickle.

It's time for we dialyzors to demand our rights. You go girl!

[LeRoy Holmes Jr.]

Go Get 'Em Anna! If it can happen to you, it can happen to any of us. Give 'em hell!

[Prof John Agar]

Dear Anna

I dont know what to say ... and that is (nearly) a first for me.

This is so sad. So very sad. That in what one hoped might be enlightening times, the dark persists. As you know, home dialyzors (to use a Bill Peckham term) have been dialysing here, alone, for 40 years.

It is so sad that fear ... fear of litigation, fear of the unknown, fear of being an unknowing, maybe even fear of a knowledgeable and capable dialysis patient (I am sorry to use the term 'patient' on Bill's site but old habits die hard) ... should be so prevalent still.

I dont know how to help you or how to change the misconceptions so many of my colleagues and our nurses still have about dialysis - yet I HAVE tried my best to do so in my own small way. Here, in Oz, we are not so unenlightened - and I am thankful for that (as are our patients ... there I go again, Bill). One day, hopefully, the US will catch up but, it is truly sad to see how far behind the rest of the world you are starting from.

But, like you, I despair at times like this. Dont give up though. I wont either. There are more than you know, out here, that actually DO understand.

John Agar

[Roberta Mikles]

Anna, I agree with John Agar. And,if there is anything that I can do to help, please do not hesitate to contact me. Hopefully, and we pray that this will be resolved so that the result is in your best interest that will support your quality of life. Although not everyone is a candidate for home, for various reasons, those that choose to do so should be able to without such obstacles. Roberta Mikles, Health Care Patient Advocates, RMiklesRN@aol.com

[Alec Vachon]

Anna, If I understand your post correctly:

(1) you dialyze at home with NxStage product;
(2) your clinic support was provided by a DaVita unit, which shut down on 8/15;
(3) DaVita made a referral to another DaVita unit which is not supporting your home dialysis solution; and
(4) You wish to continue home dialysis with NxStage product.

IMHO, you have a MEDICAL EMERGENCY, and should be screaming bloody blue murder to people who have responsibility to fix your situation. My suggestion is to compose a short e-mail with above four bullets (and link to posts here) plus a bullet that the situation constitutes a medical emergency. Add a catchy subject line ("HELP -- DaVita Drops Ball on My Home Dialysis"). E-mail to following individuals/enterprises WHO HAVE LEGAL AND/OR MORAL RESPONSIBILITY FOR FIXING THIS MESS (if you have problem with e-mail addresses, let me know):

Davita management (i.e., Kent Thiry)
NxStage management
ESRD Network of New York
Centers for Medicare and Medicaid Services (CMS) National Office
CMS Regional Office
Your Congressman
Your Senators

This list is not exhaustive (NY State or NYC Health Departments may be appropriate, etc.) but just a place to start. Keep banging away until someone fixes the problem. You should not accept in center as the solution. In addition, you might also add NKF and AAKP.

Alec Vachon