NxStage: Patient's MUST Comply!

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?


Well, that’s discouraging, Peter. It must have been extremely frustrating for you. “Compliance” is a job for folks who have acute illnesses. Your “job” as someone with a chronic disease is NOT to comply–it’s to self-manage, which is exactly what you do. Self-management includes noticing and reporting symptoms, maintaining your own safety, and following a treatment plan that you work out in collaboration with your doctor. Compliance is not even part of the equation.

Sounds to me like someone needs some customer service training. Or, perhaps I could go out there and do an in-service on chronic disease self-management. :wink:

[QUOTE=Dori Schatell;21085]Well, that’s discouraging, Peter. It must have been extremely frustrating for you. “Compliance” is a job for folks who have acute illnesses. Your “job” as someone with a chronic disease is NOT to comply–it’s to self-manage, which is exactly what you do. Self-management includes noticing and reporting symptoms, maintaining your own safety, and following a treatment plan that you work out in collaboration with your doctor. Compliance is not even part of the equation.

Sounds to me like someone needs some customer service training. Or, perhaps I could go out there and do an in-service on chronic disease self-management. ;-)[/QUOTE]

I am not sure why I ended up speaking to my rep’s supervisors supervisor this morning in the first place. That was a bit of a puzzle to me. She stated I had not called in at all 3 out of the last 6 months, yet for my trip to Idaho, I am spot on my supplies with about 6-10 dialysate boxes overage by the time I drive out. I would say that took some good numbers on my part and coordination with NxStage to do so. Albeit, I did lose track 3 or 4 months ago of my call in date and while waiting for a notification from NxStage, I instead had notification of my shipment came not from NxStage, but from the shipping company. No big deal, I dug out the NxStage schedule and that is the only month I had no notices or coordination which indeed was in part my fault. Not sure where the 3 out of 6 number came from since that is simply not the case at all.

I have noted on past occasions that NxStage does not always record all of my calls to the NxStage customer service reps. I have had the experience of calling back a few days later to double check the monthly supply list only to find no order waiting at all. Not sure why that would happen, but it has. In any case, I had a wonderful relationship with my first NxStage rep and in general, the NxStage home hemodialysis experience is a very positive one in all ways.

On the other hand, perhaps it would have been better for this supervisor to first ascertain whether I really had missed 3 out of 6 call ins to NxStage in the last 6 months. If that is really true, shouldn’t I be getting calls directly from my rep to say something to me? So, to wake up to a complete stranger that starts the conversation with a dialysis patient who is mentally challenged to remember all of the details of the last six months especially while I was still in REM sleep put me at an unfair advantage right off the get go. In such, I didn’t question the statement of 3 out of 6 just because I didn’t have my wits about me at that moment, but that really was the heart of the conversation on why the rep’s supervisor’s supervisor was calling me so early in the morning, well early at least from my west coast perspective and late night bed times.

I was taught as an officer in the Army to first give an opportunity to respond to allegations to anyone you counsel first, before going for the jugular. Just basic counseling techniques. There are times where the rep’s supervisor’s supervisor has the wrong information and needs to first of listen to the other side before going off into tirades of patient compliance. By the time I had woken up a bit, that is when I heard that phrase, patients must be compliant. Well, I was off to the races after that. Sorry, but I am not exactly a cool temperament when faced with truly a false allegation. Indeed, noncompliance is a key word that can lead to very severe consequences especially in the dialysis world that I do not take lightly.

In such, I decided to respond to these allegations and set the record straight. If the records show only 3 out 6 months interactions on my part, then I own up to one, I corrected my knowledge of the delivery schedules and I have made direct contributions to maintain a precise inventory to the point I am within 10 boxes of dialysate on the date I am scheduled to leave for Idaho. Sorry, what part of noncompliance is that? Where is the lack of coordination to accomplish that trick. I did this specifically so that there would not be any confusion with my first shipment to Idaho. I didn’t want a split order to CA and a split order to Idaho. I would call that good utilization of my supplies and planning, which is not the hallmark of “noncompliant” patients.

In any case, I have asked for a new rep as I truly do not believe she wishes to work with me at this point any more than I wish to work with her. I have deliberately kept my criticism of all of the mishaps since I believe June of last year to a minimum, but I will not be accused of a serious allegation, noncompliance that has in many patients led to discontinuation of therapy. If that is the first of many steps in documentation that I faced today, then NxStage would be making a serious error in judgement.

So, I remain a bit puzzled by the entire encounter on why I spoke to my rep’s supervisor’s supervisor when I hardly hear directly from her at all. At best, every other month if even that. I have made a request today for a new rep and I will become perfect in all of my ordering before the due date each and every month. I will not take responsibility for someone else’s errors and if I need to document that in a log format, so be it. I would hope NxStage will respond in kind. I would also appreciate hearing directly from my rep long before talking to her supervisor’s supervisor. That is just not the way to resolve real or perceived conflicts. Simply bad form in my opinion.

Have you suggested to the rep or the rep’s supervisor at NxStage that you’d prefer to communicate with NxStage by email? That way you could send an email monthly about your supplies and both you and NxStage would have record of that communication. Communicating by email would also avoid the rep waking you up. If the way NxStage prefers to communicate with patients is by phone because there may be questions or issues to discuss that neither of you could foresee, since NxStage serves people in multiple time zones and with different home and work schedules, perhaps the NxStage rep could note in patients’ records when the best time to call is, e.g., call after 10 a.m. and before 9 p.m. (time zone). If you’re concerned your calls may not be noted in your record, I’d suggest that you follow up phone communication with an email confirmation of the call. Then if anyone (NxStage or your clinic) questioned whether you’d made contact at the required frequency, you’d have a copy of the email as documentation.

The email option is an excellent choice since I don’t have voice mail, nor will I by choice. It also gives the hard copy record that is missing with phone messages. I wish someone had given me this option before today, but in fact, yesterday was the first day that anyone mentioned email.

I now have a new rep, I have a direct line which I did not have before, and I have email address to my rep and to her immediate supervisor. NxStage would improve things greatly for all patients by simply affording all patients that same courtesy. I feel that this matter is concluded and I look forward to getting to know my new rep.

Email will also allow me to send one email to the folks at Kaiser, the folks at Kaiser Renal Program, the traveling dialysis unit AND NxStage all at the same time. For 3 years, I have had to coordinate all of my own travel plans. This will certainly simplify the issue. I wish that they had offered this to me 2 years ago. But yes, email is absolutely the way to go. Thank you.

I also got a message from “John” some superviser with NxStage to call “about an important matter”. I called and left a message that night and he called back in the morning with another message and I called back a few minutes later. He started out asking if I got the reminder calls. I told him I did - sometimes explaining the recording is already into the message by the time the receiver says ‘hello’. If I answer the phone, I know who it’s from. If my son answers the phone, he does not know who it’s from. I suggested they put a delay on the recording for identification which he agreed with. I also asked if I could get a shipment schedule like I have had in the past so I can see and plan when to send inventory instead of relying solely on an unreliable recording. He agreed and emailed me the schedule and inventory forms which I haven’t had for some time. Because I personally do check email regularly, I asked if I could get email reminders which are more reliable for me rather than a recording on the phone that I may or may not get. After moderately lengthy conversation, he asked when I was going to send in the inventory. I told him I sent it the day before. Several times I have recieved either the inventory call or ‘where is your order’ call, I had already sent it in.

I think they must just be having a lot of logistical problems and are taking steps to correct them. I agree, the reps should be more proactive in their communications directly with the patients. I used to have that with my first rep but have not had that in long time. I am compliant. Yes, life happens and I’m human but a 3 week shipment lead time is adequate to allow for that on occasion.

Hopefully these recent calls are attempts to determine the source of some of the problems rather than simply listening to the reps who may not be 100% upfront if they fear repercussions. Let’s hope communication will improve from here on out.

Wendy, that is interesting to know that thy called you as well. Sounds like you had the polite version of my call. I think for most of us who use email more these days than the phone, an email notice and email communication is the easiest and most efficient way to conduct the monthly supply list. I suspect that they will get these issues squared away. I received an email from someone we would all recognize as high up in the NxStage organization. He is looking into these matters personally. I suspect switching over to an email system would save time, improve accuracy and coordination.

I have already sent May’s request in by email and my new rep responded in kind today. Should be a better fit for all.

There is quite a lot to be said for creating a paper trail, too!

Depends on which end of the paper trail you are on when there is an issue

In the end, it all comes down to the human factor. For instance, my monthly labs with Kaiser, I sent by email what was needed to the nurse who stated he would get right on it. I went in for the labs, and no Hep B or C serologies as needed. It takes about 30 seconds to add that to the list. I called and it was added on the spot by another nurse.

When I dropped off the labs, the order was in the computer for the Hep B and C, but the receptionist needed to add the labels to the blood I already drew for those tests. After discussing a couple of other issues with him and the tech in the back room, I left. I walked half way down the hall and then realized that the receptionists did not print out the labels even AFTER I had asked him to do so in person. I went back, confirmed my suspicians that after all of that, the central lab never would have run the Hep B and C and I would have had to do them over again. I waited until I actually saw the printed labels attached to the correct tubes.

No matter what system you use, it all comes down to the human factor in the end analysis. For some reason, I end up having to check and recheck so many aspects of my own care that I end up just doing it myself in the first place such as all of my travel in different units. I make all of those arrangements myself with the head of the Renal Program at Kaiser since the Social Workers never place the correct papers nor make the correct contacts. Not sure why I am so blessed, but it is just the way it is for me. Since I have access to the names and phone numbers of the folks that make the approvals, I simply go directly to them in the first place. I suspect that there are other folks that just don’t go because the arrangements never fell in place.


You are soo correct. I couldnt count how many errors and major mistakes I have avoided by involving myself and making sure things are done properly. You have to be your own advocate and involve yourself in all aspects of your care.
Its unfortunate that many solely rely on their medical team to handle everything and not involve themselves at all. I believe many people are just afraid to ask questions as they feel the docs know everything. It doesnt help that many of the staff make their patients feel like they are below them when they do ask questions…

We must be our own advocates…


What about all the people who don’t have the mental or emotional faculties to take control of their own care? How do they get by? I am very strong and very capable of taking charge of my own care but there are times that I am completely overwhelmed and stunned by the complexities of the ‘system’. At those times I can’t imagine what others less fortunate than I do. They must be completely at the mercy of the system and I pray there is someone good - some angel somewhere - looking out for them… Seriously.

Now, Peter and everyone else, that you now know how I feel about these people and why? I agree with you, Peter, 100 percent.