In-Centre vs Home Nocturnal ... Which?

Ask Our Experts Dr. John Agar, Nephrologist
1

“Moosemum” posted the following statement under the heading ‘Culture Gap between Corporations and Patients’ at Gary Petersons website and blog page “Fix Dialysis” [http://www.fixdialysis.com] …

“All I know is that I’ve done extensive searches for in-clinic nocturnal dialysis, and I have found nothing within 50 miles of me. I’ve also learned from my local clinic that they have only one patient in the entire county doing NxStage…and I am just outside of Chicago, not exactly the hinterland.”

‘Dori Schatell, from Home Dialysis Central [http://www.homedialysis.org ]

"It IS hard to find in-center nocturnal programs. Your best bet is to contact the LDOs and ask where their nearest programs to you are [NB: this statement applies to US readers only] … but … think about the hours, though, and do think about home."

I agree wholeheartedly with Dori that Moosemum … and all the others out there wanting the very best from their dialysis … should embrace the idea that “home is best.”

Simply put – it is!

Why?

  1. Dialysis at home puts you in total control of your own destiny. You no longer need to depend on others – others who, despite all their best intentions, have commitments of their own beyond and sometimes above their commitment to you, their dialysis patient … and, even more, you are not their only dialysis patient.

At home, you are master of your own care. Our experience tells us that no-one takes more care, is more meticulous with their fistula, more attuned to their own dialysis, the nuances of how they feel, than a patient him/herself. No-one!

At home, you set your own timetable. You dialyse to suit yourself –and no-one else. Any form of facility care – except perhaps the Auckland model from New Zealand – imposes a schedule other than your own. This includes facility-based (in-centre) nocturnal dialysis.

  1. Facility-based nocturnal dialysis delivers extended hour treatment – and make no mistake, this is a decided benefit. For that, it gets much credit. But, facility-based nocturnal does not deliver on frequency. I am not aware (and maybe I can be corrected here if I am wrong) of any facility-based nocturnal program, anywhere, that offers more than 3 nights per week.

Three nights of dialysis per week implies – no, it demands – a long break! A long break is inevitably stressful to the heart, the circulation, the blood pressure and the body as a whole. I have expanded on this point many times in answers to previous posts at this site.

It has also often been shown by others that, in standard dialysis programs, many more deaths occur on Sunday nights (the long-break ‘end’ night of the Monday/Wednesday/Friday 3 x week shift) and on Monday nights (the long-break ‘end’ night of the Tuesday/Thursday/Saturday 3 x week shift).

We know that the long break is the single most mortal ‘event’ in the weekly calendar of any dialysis patient and yet facility-based nocturnal dialysis has, sadly, missed the opportunity of correcting this and has imposed the same frequency rosters on its patient population as conventional 3 x week dialysis has done for all these years. What a missed opportunity - but opportunities once missed tend to remain un-taken.

  1. Only at home can a dialysis frequency of at least 7 treatments each two weeks … a ‘rolling’ roster … be established. More than that, the home dialysis schedule can even more frequent – to the limits of tolerance and acceptability of the individual patient.

While in my own program we encourage a 5 night per week program for our patients, some prefer to do less while others prefer to do more. Treatments for our home nocturnal patients vary from every other night through to 6 nights in every week – as desired by the patients.

However, one thing is clear … all our patients do at least alternate night treatments and all have abolished the long-break. This is also true of the vast majority of Australian home dialysis patients and all of the patients in my own program.

So … home nocturnal dialysis offers the very best of the possible options in dialysis … longer treatment length and higher treatment frequency.

I have discussed these issues in far greater depth at my website http://www.nocturnaldialysis.org in my discussion re the various available dialysis modalities in the Dialysis Choices section, in the Dialysis Issues subsection on Blood Pressure and Ultrafiltration and elsewhere in the Comprehensive Nocturnal Dialysis section where I discuss sessional frequency and treatment length.

Dori is right … … think about the hours, though, and do think about home.

2

Gosh, I didn’t see this post from Dr. Agar until today, more than two months late!

Well, I have no intention of dialyzing in a clinic. OK, I know I’ll have to start in clinic, but I will not do ICHD when I know that extended HD at home is so much better. That’s not up for debate. But I have to admit to being confused about home nocturnal hemo; I know that there are dialyzors who do it, but which specific machine has been approved for home extended/nocturnal use? I understand that NxStage is trying to get FDA approval for “extended” use, and I have even approached the FDA myself, but who knows how long that will take? I know that nephs can write off-label scripts, but then you run into the problem with the actual clinic maybe not supporting you. So, for dialyzors in the US, which machine do you use for NHHD? Did you have any trouble getting your neph and/or clinic to help you?

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Dear MooseMum

Clearly this is a question for US dialyzors to answer though I do know that the majority of US overnight home dialyzors do use the NxStage machine with a lesser number using some of the Fresenius models available in the US. In my unit in Australia, we use the Fresenius 4008B, a European model not (I think) sold in the US. Others here use the Gambro AK95 or the Gambro Ultra (so that home HDF can be supported) while we are moving to the Fresenius 5008 so we can begin to roll over our program into HDF at home. NxStage comes here, this year we think, and will make interesting times as I am sure we will want to gain some experience with it, too.

In the US, there are no machines (yet … to my knowledge) that are nocturnal home approved though I know that NxStage has been pushing for this - has it come through yet? - not sure … maybe someone in the US can advise … and that some of the newer machines planned to be available later in 2011 also aim for this FDA ‘mark’ of approval. Here, we do not have the same restrictions and limitations (thankfully) that often seem to hold back your progress. That’s not to say that the FDA do a good job but the US approval process is gargantuan and often so very slow.

Perhaps some of the US readers of this site might like to add their views and let us both know what they use and why.

4

No, FDA approval for NHHD with NxStage has not come through yet, but they’re working on it. I know that there are dialyzors in the US who do NHHD, and I am wondering how they manage it…do they just get their nephs to write them an off label script? I’d love to hear from anyone here in the US who could share with us a few tricks. Is it super secret or something? Will you tell me but then have to kill me…?

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Dear MooseMom, unfortunately the battle for optimal dialysis is hardest in the one place it should be the easiest, in the nephrologists office. Few nephrologists in America practice optimal dialysis practices for a variety of reasons starting in their training programs where the academic nephrologist term more frequent and longer duration dialysis as controversial, yet hypocritically they overwhelmingly choose this option for their own renal replacement option as a brigde to transplant. There is not enough data only when it comes to their own patients, not their own treatments.

Unfortunately, the financial incentives for home dialysis remain skewed even under the bundle, but early indications are that the bundle will improve the number of centers offering home dialysis. The problem remains that that is only a small fraction of the total dialysis units in America at the present time.

When it comes to the issue of convincing the unconvinced, you are really in an uphill battle since they do not accept any of the medical literature to date as proof of the concept of improved care, even ignoring the overwhelming results of the FHN to date. Longer duration dialysis is deemed unproven and unfortunately unprovable since NO ONE is talking about further trials since the failed FHN nocturnal study that could not enroll enough patients to consider the outcome in a high enough powered cohort.

Thus, the search you have really entered into in my opinion is not one of finding a nephrologist you can personally convince, but instead I believe it is more fruitful to seek out programs already in existence and seek approval to utilize that program as your own optimal dialysis option.

Since NO machines are specifically approved for the nocturnal use, and NxStage is only approved for short daily at present, the prescribing nephrologist must reach beyond the standard practices of today. Unfortunately, the risk management arm of most LDOs will not venture into that territory rightly so because of the risk of litigation from any adverse event that could occur on dialysis completely unconnected to extended or nocturnal treatments. I know Kaiser is waiting for the nocturnal listing by the FDA before expanding their NxStage home program to cover nocturnal as well. Simply a reality of American medicine that has 25% of the entire lawyer population in the world.

Fortunately, the number of programs willing to expand the range of options for patients is growing but I would not personally myself attempt to get a nephrologist to engage in the prescription of nocturnal if they don’t already do it by virtue of their own professional conviction that longer AND more frequent hemodialysis improves outcomes over usual incenter and even short daily home hemodialysis. After nearly 3 years of dialysis advocacy, overcoming negative views towards dialysis is a very difficult challenge simply because there is never going to be the right study to convince the inconvincibles.

Should NxStage actually gain the FDA approval that they are seeking, then the door to nocturnal dialysis will truly open. Until then, it is a formidable and frustrating battle. Technically, any nephrologist can legally prescribe off label right now, yet most will not for the above reasons. It is quite sad that American dialysis practices could literally change over night should the central leaders of American nephrology so advocate for their patients as they advocate for themselves and their families. It truly would be that simple, yet the academic bias against optimal dialysis runs deep.

In the end analysis, I would not discourage any patient from approaching their nephrologist, but I believe it may be a more productive route to first exhaust all local options that may already prescribe nocturnal to their patients. If you are unable to find that as an option, then by all means put forth a full court press against your nephrologist, but do not enter such a battle unprepared for great resistance. Sadly, that is the state of affairs for the majority of patients who seek these options.

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Dear MooseMum

I asked Peter to give this answer as both a giver (Internal Medicine physician) and a user (NxStage dialyzor) within the US system. He has done this admirably - as always.

Thank you Peter … your response is much appreciated. Hopefully, this may be clearer now. One day, you will get more freedom to choose what is best for you, MooseMum, an an individual - and will be able to choose as an informed patient with your own input into your individual choice - but, for the moment, the US has a system seemingly geared to the lowest common dialysis denominator with little allowance for more enlightened options or choices. Till then, I think the course that Peter has plotted is the very best possible.

Again, Peter, my thanks. Would there were 1,000 more ‘Peters’ - or, perhaps Don Juan Peters - to tilt at the all those windmills!

7

Thank you both. My neph’s clinic (which is not affililiated with either of the LDOs) does offer NxStage, and I know that they will offer extended. I think they balk at offering home nocturnal at this point, although I have not yet had this in depth discussion with them. I do not really anticipate a problem getting what I want. But I can’t, in all good conscience, just stop there; it feels inadequate for me to settle for “I got mine, I don’t care if you can’t get yours.”

8

I am using Nxstage and Have for a year now… I have been working with my clinic and My doctor and Insurance company to get this approved… I have Kaiser insurance and I have been approved to start Extended ( Nocturnal ) thru my clinic… My Doctor has help alot with this challenge… We have been working on this for 8 months now…and now its here… I start on Monday… I was told by everyone, my Clinic, Kaiser, all the CKD education people thru Kaiser that NO ONE does nocturnal… NO one in the country… that what I was told… I had to bring in documents showing that others are doing extended… show models of what some other centers are doing… Anyway… ITs a go for me… and I am happy…
Peter… I bet you can start extended now… If its good for one Kaiser person it should be for everyone…