NxStage: Patient's MUST Comply!

[Hemodoc]

By Peter Laird, MD

I was wakened by my wife this morning at about 8:30 am. That may not sound like an early day for most, but I have migrated into a late night bedtime usually between 1 or 2 am and I need the full eight hours of beauty sleep to keep from being ugly the next morning. However, my wife at times tells me it isn't working even with all of my beauty sleep. This morning turned out to be no exception. I found myself wringing the sleep out of my eyes talking to my NxStage service rep's supervisor's supervisor. It would have been nice to hear from my own rep, but usually all I get is a computer recording listed as "5100" reminding me it is time to call with my inventory.

I got this month's reminder on Monday as I was getting ready to return from Las Vegas. Not perhaps for the reason that Las Vegas conjures, my wife's cousin lives there and my mother in law wanted to see her before returning to the Philippines in a couple of weeks. We returned late Monday night and then I had a meeting for lunch with a dear old friend of mine who recently lost his wife to cancer. It was great seeing him again, but I wish it had been under different circumstances. They were a wonderful God fearing couple that I enjoyed spending time but we had lost contact for a few years as can happen unfortunately. I am going to miss her company, but I know where she is in no more pain or suffering. I didn't feel well after two days off but I did get the run off to a successful start about 6 pm. I wasn't ignoring the message from NxStage, I simply couldn't get to it until today.

In any case, I found my morning routine broken by at first a kind hearted voice on the other end of the line discussing the "fact" that I had not contacted NxStage "3 out of the last 6 months." This was news to me since I have only missed one call in nearly 24 months of home dialysis. I received a default shipment that month while waiting for a reminder call that never came and it was actually what I would have ordered anyway. In fact, when I first started on NxStage, I loved my customer service rep named Lauren. She called like clockwork if I failed to get back to her in a couple of days from the phone reminder. In the 12 months that she helped guide my deliveries, there was never a single issue, all the orders were perfect every time.

Things changed dramatically for the worse when I was assigned a new customer service representative nearly a year ago. I had orders shipped to CA when I was in Idaho even though I had already been in Idaho for several months. I had an emergency machine swap out sent likewise to CA while I was in Idaho at about the same time and went 3 days without dialysis until they were able to send a second machine to the correct place. I have had half orders obviously sent for someone else since it was only enough for using 20 liters per session instead of my prescription for 40 liters. Perhaps that is what the supply computer told the rep to send. Yet, through all of this, we were able to come to a meeting of the minds and for the most part, I thought matters had improved and I let bygones be bygone. Then I got the phone call this morning from the supervisors supervisor.

I was a military man for a good portion of this life and believe in following protocols of the chain of command. In other words, if you have an issue, you call that person directly before going to a higher level. I understand that most folks don't adhere to such formalities, but it just makes sense to me after spending 9 years in service.  I prefer to call the on call service reps and then often I will double check just to make sure the order is correct. I have found that at times,they don't document each and every call when I do my call back checks. In addition, everything in medicine is conducted under doctors orders by prescription.  A couple of months ago, I placed an order for drain lines which did not show up. When I called to find out what had happened, I was informed that the prescription had expired and they needed a new one.

Fair enough, but that required sending an order of drain lines by express mail outside of the usual shipment which is an extra charge. Perhaps a simple call from my service rep could have taken care of that issue before it became an issue since no one communicated this to me or to my unit in any manner before the fact, they simply refused to send the requested material without the correct prescription. I was in a situation where I had short supplies of drainage lines even though I had informed NxStage in a timely manner. I have yet to run out since I keep close tabs on all of my supplies and still had enough to keep that from happening. With 23 years of formal education behind my name, the least I can do at this time is to know what is in my supply room or not.

Making a long story short, I remained respectful this morning until the manager who woke me from my beauty sleep, and a difficult sleep it was with the headache of not having dialysis for two days, to inform me half way through our conversation: "patients must COMPLY" with all treatment and patients "cannot direct their own care" after simply telling he what I needed for my next shipment. That snapped my head out of its socket and as in all cases where beauty sleep is interrupted, things can get ugly indeed. The supervisor's supervisor stated I am not allowed to give the amount of supplies that I need, I must COMPLY and give the inventory and the computer will determine what I need. Sorry, but the computer has not been my friend on more than one occasion in this dance with my NxStage medical team. I went ahead and gave the inventory off the top of my head since I had planned on calling NxStage today anyway.  After all, the reminder was only on Monday. I then asked a confirmatory question, now that I have given you my inventory, what are you going to send me? That lead to more discussion that patients do not direct their own care and must COMPLY. I am left wondering what will show up with my next delivery since my rep's supervisor's supervisor would not even confirm the order with me. It was for me to simply COMPLY and not ask questions.

All is well, but if this is going to be a partnership of care, after all, I am unsupervised when placing 15 ga needles into my arm under aseptic conditions with all of my blood whirling through a machine that I set up, start and stop according to my specific needs for the day, yet I am not allowed input on making sure my orders for supplies are correct. Talk about losing beauty sleep over this conversation.  The upshot at the end of the conversation is that they will send me email reminders instead of voice mail which I simply do not use. I will comply in all aspects of my care to include documentation of ALL untoward supply mishaps. I shall be a good little boy and do exactly what I am told to do, it is my hope that all involved in my supply chain shall likewise do the same. Unfortunately, what has started two years ago as a cordial partnership of care with absolutely no hitches whatsoever is now devolved into calls from my service rep's supervisor's supervisor without hardly a call from my rep in the first place. What am I missing in this equation?

http://www.hemodoc.com/2011/05/nxstage-patients-must-comply.html

[Willis]

Pete

I think this is one of those cases were you need to go up the chain-of-command until you find that person who is really in charge. If they are treating YOU, a widely-read blogger and a physician yourself in such an uncivil fashion how are the "normal" peons being treated? I think "pulling rank" in such a case (i.e., by laying your credentials out on the table) would certainly be warranted for the benefit of all.

The service you report is just unacceptable. I realize the customer service reps are probably faced with difficult auditing requirements vis-a-vis the government that makes THEIR compliance an issue. And at least to the low level reps you are just one more blip in their computer. But as someone who makes his living developing computer applications I understand more than most that blaming "the computer" should never be a crutch to support bad customer service.

I certainly understand too that in the end it's the tone of the statement "Patient's MUST Comply!" that sets us off. Is this not a two-way street? Doesn't the vendor have an equal or greater obligation to meet their own contracted service level agreements? ~sigh~ I guess this is what we can expect when the real customer is an insurance company or government bureaucrat (who pays the bills) and not us, the actual patients.

 

[boswife]

EWE... i dont like the sound of that as................. they have been behond pleasant and accomidating for these 4 months of orders and it worries me that things could change.  Im not good with confrontation as in...it throws my world.lol.  I have had a few misshaps where i thought they were going to charge as it was 'my' fault for having to toss something, and they have just sent with a happy voice and no charge. (and one was a PAK!) I AM very compliant (patient MUST be compliant..ick), though i do keep slowing down hubys BFR withougt asking..lol  Well, i guess i did ask in the beginning, and so long as it doesnt alter the 'supply' list, i guess i dont have to ask each 10 i go down.  Well, let us know if there comes more of this, and hopfully, someone else just woke up too early and needed to take it out on someone else 'YOU'  and they're done with their little BIG tyrade...  I'd hate for NxStage to change their ways.  They hav been so overly wonderful so far, so hope this is an isolated misshap, and unfortunatly, you were the brunt of it

Or........ (just read willis post)   PUll rank and straighten them out 

[greg10]

By Peter Laird, MD
...What am I missing in this equation?
http://www.hemodoc.com/2011/05/nxstage-patients-must-comply.html

It is not the you, the patient that is missing in this equation, it is NxStage's antiquated manual inventory system which is too dependent on human customer service representative to plan and fulfill the orders.  All of these can be automated online with customer logging in to an inventory ordering system.  I can see technical support to be fully human interactive, but the inventory side is probably not necessary.  It doesn't help that NxStage customer service usually don't answer emails either.

[Hemodoc]

Timing is a very important element in many human endeavors.  Wouldn't you know, I have forgone making any complaints on my blog for nearly a year about this ongoing supply issue, and a simple comment: "you MUST comply" snapped me out of that self imposed silence against all of these supply issues. Not 10 minutes after I posted this article on my blog, I received an email from a different NxStage administrator wanting to have me comment with their PR company on the benefits of NxStage. We will see if they call me back with a return call after all. LOL.

Oh well, great timing indeed, but when asking a simple question of confirming what they are going to send me knowing exactly what my requirements are each month and being met with the response: patients don't direct their own care, YOU MUST COMPLY just is plain and simply the wrong PR statement. Sorry, just plain simple and ugly truth.

[Willis]

Resistance is futile. You will be assimilated...


 

[cookie2008]

I get the 5100 reminder every month, I used to do the automated system but no longer do, they would call my center and told them I never called it in, so now I email everyone what I have in supplies and I have no problems now.

[okarol]

I get so mad when patients are treated like idiots. Where is the customer service training???

[lmunchkin]

I have yet to have a problem with my orders.  I have a problem with where they deliver it.  We have a wheelchair ramp on the front of our home.  I have left a dolly on front porch for them to put supplies on when we are not there. Guess where they deliver?  On our driveway!
To take up 15 flights of stairs into the storage room, is totally ass-a-nine!  I complained to the clinic and they got it corrected for us!
I do love the Nxstage, but have recently found it to be very expensive to do. It runs about 78 thousand a month! I don't understand why?  He hasn't had to do EPO in months, but it still seems high to me. Thank God we have insurance, M'Care & BCBS.  But the BCBS is a Cobra, which ends in several more months. Would love to continue to honor my husbands wishes to be done at home, but he may have to go back in-center if we can't get something figured out with "COST" of it all. 

  lmunchkin

[Jie]

They just think all patients are stupid. For Baxter PD supplies, the representative also asked for inventory. I told them every time that I did not know my inventory, but I did know what I need. Fortunately, Baxter representatives were willing to take my order without giving out inventory. I ordered just enough for 4 weeks, and if I traveled, I reduced the amount from traveled days. When the new supplies came, I had about 10 ten days of supplies left. So, it was not necessary to count inventory.

[Hemodoc]

Just a quick update. I now have a new rep and I will contact her by email which I already did today. In general, NxStage is one of the most customer friendly companies I have ever dealt with. I consider what happened yesterday as an aberration and I suspect that they will overcome these growing pains.  I suspect that they have hired many old time dialysis nurses and administrators who have not yet been NxStagenized to a new environment of customer service.

The wording that the supervisor used is right out of the usual dialysis industry response considering patients guilty before being judged. I don't do well with that sort of approach, but I am assured that things will go more smoothly in the future. From my past experiences with NxStage, I suspect that is the way things will go.

Zach said it best in his comment, growing pains. On the other hand, we need to keep in mind what NxStage has done in opening up the home dialysis market. I can put up with human errors when the company is responsive to them. I believe NxStage is such a company. So, it was an unfortunate interaction, but I am ready to move on and keep NxStage at my side. Thinking about the type of hardship folks went through with the first generation home dialysis machines, we have it good. That is what I plan to focus on in the future.

God bless,

Peter

[Lillupie]

One of the reasons why I HATE Baxter. They think we all are stupid. I know what i use after 3.5 years doing the same thing. Why do I have to tell you what I have? Seriously!! Grr. I despise calling them, so I wait until the last minute. Not only that they have to insult me by calling me to remind me it is not time to place my next scheduled order. So I changed my number, refusing to give them my old number because I dont want to be reminded like Im a kid!!! Grr.

Lisa

!

They just think all patients are stupid. For Baxter PD supplies, the representative also asked for inventory. I told them every time that I did not know my inventory, but I did know what I need. Fortunately, Baxter representatives were willing to take my order without giving out inventory. I ordered just enough for 4 weeks, and if I traveled, I reduced the amount from traveled days. When the new supplies came, I had about 10 ten days of supplies left. So, it was not necessary to count inventory.

[Trikkechickk]

I simply e-mail my inventory by the date due - never have had a problem!

Alot of patients do not follow "the directions" given.

[FineWhine]

I searched on COMPLY and found this chain. Now I am worried. Not on home dialysis - yet. But I am having trouble fitting into the round holes, being a square peg. I have grrrreat numbers, actually pretty high functioning PKD, massive Polycystic Liver, even cysts in the pancreas. I never gain fluid, but I need Epo and iron. I want to change my schedule, knock it down to 2 days a week. I feel so bad after treatment, and my diet is very well controlled. But the doc and Fresenius are not listening to me. I have had to miss a couple of sessions, and nothing happened. Why won't they take that into consideration and work with me. I know my body very well. Not as good as you do yours, Hemodoc, but I do try to keep up with the latest medical papers and knew a lot more about nutrition than my last 2 nephs. Spooky. Advice? 

[lawphi]

We were hassled trying to arrange NxStage supplies to Baltimore before the transplant.  We were essentially told tough luck and to carry four days of bags on the plane.

We never had issues getting PD supplies shipped at the last minute.   

[Hemodoc]

I searched on COMPLY and found this chain. Now I am worried. Not on home dialysis - yet. But I am having trouble fitting into the round holes, being a square peg. I have grrrreat numbers, actually pretty high functioning PKD, massive Polycystic Liver, even cysts in the pancreas. I never gain fluid, but I need Epo and iron. I want to change my schedule, knock it down to 2 days a week. I feel so bad after treatment, and my diet is very well controlled. But the doc and Fresenius are not listening to me. I have had to miss a couple of sessions, and nothing happened. Why won't they take that into consideration and work with me. I know my body very well. Not as good as you do yours, Hemodoc, but I do try to keep up with the latest medical papers and knew a lot more about nutrition than my last 2 nephs. Spooky. Advice? 

Dear FineWhine, two days a week is not enough dialysis to sustain life. You state that you feel terrible after dialysis, but if you did dialysis at home on a daily basis, you will discover the hidden secret of dialysis, it is not dialysis that is causing all of your symptoms, it is the WAY the for profit dialysis companies such as Fresenius DO dialysis with short treatment times and high ultrafiltration rates that causes the "symptom" of dialysis such as nausea, vomiting, cramping, light headedness, dizzyness, passing out, terrible thirst after dialysis, headaches, fatigue and general malaise that all lead to high rates of depression. My goodness, who wouldn't be depressed enduring such torment three times a week.

I would strongly recommend against skipping dialysis sessions since the medical data shows very conclusively that puts you at higher risk of death. Instead, learn about short daily or nocturnal dialysis where the changes during dialysis are less severe and through which I suffer no symptoms whatsoever with my dialysis unless it has been after a two day hiatus where I get a mild headache from the fluid and solute shifts across the blood brain barrier. Dialysis performed within simple physiologic parameters inside the body, working with them not against them will give you an entirely different outlook on dialysis than the usual in-center experience that is dominated by time constraints from the for-profit industry where they need to get so many widgets through the dialysis widget factory as quickly as possible, but only three times a week. Since they don't care if you die because there are many more widgets that will take your place, the only way to obtain gentle, symptom free dialysis is to go home.

So, I would strongly recommend that you reconsider two days a week unless of course you wish to exit this world quickly.  The data is clear, longer duration and more frequent dialysis saves lives.  Take a look at couple of my posts that goes over the short daily and nocturnal data compared to transplant as well as PD data. Taking a look at these studies noted in these posts, it is clear that the two best options for survival are transplant or nocturnal/daily dialysis. Twice a week dialysis just is not in the consideration of survival at all.

http://www.hemodoc.com/2011/04/what-is-the-expected-lifespan-on-daily-nocturnal-dialysis.html

http://www.hemodoc.com/2011/04/what-is-the-expected-lifespan-on-short-daily-dialysis.html

http://www.hemodoc.com/2011/01/is-peritoneal-dialysis-the-optimal-choice-for-america.html

[Bill Peckham]

I searched on COMPLY and found this chain. Now I am worried. Not on home dialysis - yet. But I am having trouble fitting into the round holes, being a square peg. I have grrrreat numbers, actually pretty high functioning PKD, massive Polycystic Liver, even cysts in the pancreas. I never gain fluid, but I need Epo and iron. I want to change my schedule, knock it down to 2 days a week. I feel so bad after treatment, and my diet is very well controlled. But the doc and Fresenius are not listening to me. I have had to miss a couple of sessions, and nothing happened. Why won't they take that into consideration and work with me. I know my body very well. Not as good as you do yours, Hemodoc, but I do try to keep up with the latest medical papers and knew a lot more about nutrition than my last 2 nephs. Spooky. Advice? 

Dear FineWhine, two days a week is not enough dialysis to sustain life. You state that you feel terrible after dialysis, but if you did dialysis at home on a daily basis, you will discover the hidden secret of dialysis, it is not dialysis that is causing all of your symptoms, it is the WAY the for profit dialysis companies such as Fresenius DO dialysis with short treatment times and high ultrafiltration rates that causes the "symptom" of dialysis such as nausea, vomiting, cramping, light headedness, dizzyness, passing out, terrible thirst after dialysis, headaches, fatigue and general malaise that all lead to high rates of depression. My goodness, who wouldn't be depressed enduring such torment three times a week.

I would strongly recommend against skipping dialysis sessions since the medical data shows very conclusively that puts you at higher risk of death. Instead, learn about short daily or nocturnal dialysis where the changes during dialysis are less severe and through which I suffer no symptoms whatsoever with my dialysis unless it has been after a two day hiatus where I get a mild headache from the fluid and solute shifts across the blood brain barrier. Dialysis performed within simple physiologic parameters inside the body, working with them not against them will give you an entirely different outlook on dialysis than the usual in-center experience that is dominated by time constraints from the for-profit industry where they need to get so many widgets through the dialysis widget factory as quickly as possible, but only three times a week. Since they don't care if you die because there are many more widgets that will take your place, the only way to obtain gentle, symptom free dialysis is to go home.

So, I would strongly recommend that you reconsider two days a week unless of course you wish to exit this world quickly.  The data is clear, longer duration and more frequent dialysis saves lives.  Take a look at couple of my posts that goes over the short daily and nocturnal data compared to transplant as well as PD data. Taking a look at these studies noted in these posts, it is clear that the two best options for survival are transplant or nocturnal/daily dialysis. Twice a week dialysis just is not in the consideration of survival at all.

http://www.hemodoc.com/2011/04/what-is-the-expected-lifespan-on-daily-nocturnal-dialysis.html

http://www.hemodoc.com/2011/04/what-is-the-expected-lifespan-on-short-daily-dialysis.html

http://www.hemodoc.com/2011/01/is-peritoneal-dialysis-the-optimal-choice-for-america.html

Having a large urine output changes the calculus a lot.  If you are never gaining fluid then you are in a group of people that need a customized dialysis prescription just for people who don't need fluid removed. A dialysis treatment should not leave you feeling sick and since you are not using a high URF than I would want to know that the delivered sodium level of the dialysate is at or near my blood sodium level at the initiation of dialysis. I'd want to know the results of a 24 hour urinalysis and based on the results I'd expect a dialysis prescription that left me feeling well.

It maybe that more frequent dialysis would give many of the benefits the papers have found for people with no output. But it is also possible that in your particular situation a two day a week schedule would be better. There is a marginal clinical risk taken each treatment, not to mention the marginal discomfort and inconvenience. This needs to be weighed against the marginal benefit. However, if you are Medicare primary there is another dynamic working against you - the new payment bundle.

The payment of EPO is in the Medicare's bundled payment for the treatment. Let's say you need 15,000 units of EPO/week. If you dialyze 3 times you will get 5,000u/treatment and the unit will receive three payments. If you go 2 times/week you'd get 7,500u/treatment and the unit will receive 66% of the payment they received if you went three times. Since the bundle pays for the average EPO use (in 2007), about 5,400u, in the example I chose you'd be going from the plus side to negative side on the balance sheet.

If you are in the 33 month window and your unit is billing an Employer group Health Plan (private payer) then payment would be a barrier because your unit would be receiving a large premium every time you treat.

[kitkatz]

Sounds like you need a big stick to deal with these people! 

[tyefly]

Late on my post.... but   I just email my needs to nxstage....  they tried to get me to do the computer thing  but my rep  just email me and I tell him that I need a month worth of supplies.....  Seems to be working for me here...... glad you got a new rep.....