A 9 point home dialysis plan


#1

A nine point plan for better home dialysis

What (I think) is needed is a cohesive home HD and home PD plan.

Neither home option should predominate.

Both should compliment the other.

But …

• Home dialysis programs must be (and are) at a global cost advantage for the provider … all home dialysis programs have confirmed both HHD and HPD to be so

• Home dialysis must be globally accessible to all who ‘can’ … recognising that (likely) a mean maximum of ~50% of dialysis patients (Australian data) are suited to home care options

• Home dialysis must provide an outcome benefit for those patients who are capable of home care – be it HHD or HPD

• The carer … if a carer is available (Australian experience has shown a carer, while preferable, is not essential) … must be valued, supported and funded – if not to a full carers ‘pension’, to a pre-determined dialysis ‘carers’ pension

• Home dialysis must be at no ‘cost penalty’ to any home patient – nor to their ‘carer’

• Indeed, to succeed, the home dialysis patient – and carer - must be encouraged -… even more, incentivised … to be positive and proud of their home-care decision

• Incentives may include utility assistance – see http://www.renalbusiness.com/articles/2011/03/making-dialysis-green.aspx

• Importantly … the home dialysis patient must be regarded as the optimum and not the peripheral patient in the ‘pot’

• Underpinning the success of any home dialysis ‘initiative’ must be a system requirement for all nephrology trainees to be exposed to all home dialysis options (this is a requirement in Australia) … but, how this can be achieved in the US? – possibly through service ‘bonuses’ (as we do here) – but this is, ultimately, for US policy-makers to determine

Achieve these goals … and I believe that a viable, vibrant, sustainable and self-perpetuating home program is achievable.

I know there seem to be a lot of boxes to ‘tick’ … but we have ticked them … so , in due course, can the US.

Good luck with Congress next week (5/10/2011) … let’s hope sense prevails.


#2

John, great post. You summed it up well as usual. For anyone that has spent time in both the home and the center, there is simply no better place to dialyze than in the comfort of your own home, which I am doing as typing right now. The outcomes are better, the costs are lower, and people regain their lives in so many ways. I don’t do well with folks telling me what to do. Not a big secret there to my old techs and nurses who agreed completely, yes, send the doctor home. LOL.

Honestly, home is the best place to stay alive. I am grateful for NxStage that they have given us this option with the added bonus of being able to travel from one location to another. A tad bit heavy for this old body of mine, but indeed, I have had to regain the ability to lift the machine by myself, which in the long run is a benefit to my overall health. I used to be able to easily pick up 150 pounds without much thought, so the first time I tried to lift this 75 pound machine really opened my eyes to how much muscle mass and strength I had lost. Thankfully, I have all of been able to regain some of that and now I do lift the machine by myself when putting it in the car for travel. Well, my wife grabs on as well, but it is really me doing all the lifting now, just don’t ask my wife about please.

The concept of portable machines is a godsend that appears to only be in the infantile stages that will come. It is a secretive business as I have come to find out, but the rumors and veiled comments about what is coming next does give me great hope that the home dialysis market will expand, saving money and lives at the same time. It is good to be alive thanks to this little machine humming away beside me. I believe that we are entering the time that Scribner envisioned all those years before. It is my hope that his vision comes full circle. What a grand little experiment he began. NxStage is part of that entire vision coming home in a very real manner. I am grateful indeed.


#3

Dear Peter

Thank you for your most positive response and I agree with all you say.

I think the home dialysis environment will be a vibrant and interesting space to be involved in over the next few years - and for those, like me, who have been in it since the days of Scrib, way back in the 60’s-70’s, these next few years seem destined to be like the final opening of an ever-budding but never-quite-blooming flower. I think we are at last about to see that bloom open, and I do believe it will be a beautiful sight to see.

I listed 9 points in my ‘plan’ for home dialysis. But, I could have (maybe I should have) listed a 10th, to ‘decimalise’ the plan … though the ‘10th’ is more the outcome than a point along the path to reach that outcome. That said, I cannot resist the temptation to add a final 10th point as the end-objective …

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[li]The end (10th) objective of these 9 prior pathway points is an empowered patient, capable of controlling, directing and/or influencing the quantum and the quality of his or her own care - rich in achievement, reassured by independence and re-engaged with the community in which he or she lives.
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It’s not a ‘pathway point’ to reach the home objective - but it is, in our experience here, the sweetest of all the outcome measures of home care.

Go to it … as I understand there is to be some engagement with Congress (again) regarding home care next Monday 9th May: as such … good luck and fair winds.


#4

Hello Dr. Agar. What is the best resource to help decide on the best option for home dialysis machines?


#5

This is a far more complex question than you might think.

The answer depends as much on issues like the country of origin, the intended home regimen, and physician/team familiarity as it does on the machine(s) themselves – or, for that matter, patient preference or wish. Though the latter should be of paramount importance - or at least considered - particularly for and with informed patients, as home-intending patients tend to be, it is rarely seen as a prime factor in machine choice.

While I suspect you know this, it must be remembered that the prime importance in dialysis is the quality, efficiency, and gentleness of the treatment delivered, and that no matter what machine is chosen, most do not materially impact therapeutic quality - except where the machine or its delivery system(s) may negatively impact on optimum flow rates and clearance capacities. Beyond that important caveat, a machine is a machine, is a machine, and the only factors that then matter are physical size, transportability, and the water delivery systems. These are ALL dealt with in the prime reference I will give at the end of this answer.

Enough of that … so, while you have not stated your country of origin, I will take a guess and assume it is the US.

In the US, there are many confounders to machine choice! At the top of the list is whether there is FDA approval for or against the use of different systems, and the differing circumstances that the FDA considers when ‘approving’ (or otherwise) the conditions under which a particular system is used (eg, whether day time ‘wakeful’ dialysis is to be used or whether nocturnal ‘asleep’ dialysis protocols are in play). Some systems have approval for home use while others (or other regimens used at home) are not approved. Some systems can be used at home during the daytime, but not at night.

To be perfectly honest, some of these FDA ‘rules and regulations’ around home or facility use, day or night use seem, to us here in ANZ, baffling and nonsensical … but, there you have it. And then, there is the rather weird (or rather, very weird) situation where a blind eye is turned to ‘off-label’ uses for a range of available machines, and the circumstances those machines are used in when the ‘official stance’ seems quite different. My personal take on that is - that’s crazy!

Add, now, the complexity of (1) system availability and (2) system preference … and here I do not mean the preference of the patient, but the preference of the unit or the treating nephrologist, and it starts to get very messy.

Regarding provider/service/physician/nurse preferences, these are more often than not guided by

• bias and prejudice … indeed I own up to having some of those myself

• familiarity and unfamiliarity

• logistical factors like servicing, maintenance, and backup … logistics that differ, service to service, region to region, and that certainly differ across country and continental borders. As an example: in the US, dialysis companies provide central commercial company servicing, maintenance and upkeep but that is not the case here in Australia and New Zealand. Here, each renal unit (read university hospital-based and run dialysis services, as all dialysis services here are designed within that framework save for a very small number of small privately run dialysis units) provides and pays for all installation, plumbing, carpentry, building, and machine maintenance through their own trained biomedical-engineering teams. Our own unit-specific biomedical technicians all do regular home-visits and provide the home back-up needed in our home service to patients, patients whose homes and circumstances they know well. Indeed our techs become good friends with many of our home-maintained patients and their families.

• These two differing models … the US corporate/commercial/for-profit model vs. the ANZ academic/government funded/not-for-profit model … also tend to strongly influence machine choice. For instance, in our own unit, we use some 50 x Fresenius 4008S systems at home, and it would be foolish and inefficient for us to then introduce one x B-Braun, or one or two x NxStage, or one x Baxter-Gambro system as ‘ring-ins’, as each would demand a new set of maintenance skills of our service team, while a whole new range of spare parts and maintenance protocols would be required. That would be inefficient, and add to overall costs, complexity … and, dare I say it, the risk of misadventure.

• Cost matters, too. For example, in Australia, government pays all dialysis costs. As such, and fairly too, that also accords them a strong say in the choices of equipment they fund. Our Health Department has a Purchasing Department (HPV - or Health Purchasing Victoria) that tenders at set long-span intervals for the lowest cost – and it purchases accordingly once the dialysis companies put in their competitive bids. This is a factor that keeps the prices down, but can also restrict the choice of equipment that we use. If a ‘new system’ were to be introduced, it would not only have to pass the national TGA (our FDA equivalent), but would have to be at least price competitive with current systems … or it just wouldn’t get up. Within this system, there is little room for patient preference … something some may feel is restrictive and anti-choice, but something that is what it is. Incidentally, I don’t mind the system at all, as I like what we have and what we use. So, incidentally do our patients, though I admit that that is in a vacuum of exposure to all available options. At the end of the day, though, they get good dialysis, at no cost, and in a nation-wide system with far better outcomes than most on the planet.

But, there’s more. Some may be unaware that companies like Fresenius actually market different models in different regions … for example, the machine models available in Europe, Asia and our own Pacific region have NOT historically been the same as the machines models that are on offer - by the same company - in the US. So … we are often talking apples and oranges, even when it comes to machines on offer by the same company.

This dizzying array of regulation, knowledge, familiarity, practical logistics and cost make it almost impossible to cover all options at one site, and on one webpage. As a result, few have attempted to do this. That said, and to the best of my knowledge, the closest we have likely come to dealing with this has been the Home Haemodialysis ‘Bible’ that a group of 33 carefully chosen home haemodialysis experts from 11 (I think) countries put together in 2012/2013 (I think) … time flies!

This amazing array of experts in the home haemodialysis field included physicians, nurses, social workers, technicians, economists etc. … it was a truly global effort that had never been attempted before … and they literally ‘wrote the book’ on home HD.

This is available as an open web page and it on-line for all and any to use and read m- providers or users. I cannot recommend it more highly. It is now 4+ years old … but, hey … nothing in dialysis changes fast - even though many would wish it could.

The Home Hemodialysis Manual is available at the Hemodialysis International website … http://onlinelibrary.wiley.com/doi/10.1111/hdi.2015.19.issue-s1/issuetoc

Within it is a section tilted ‘Machines, Water and Infrastructure’ that I wrote with James Heaf (Denmark) and Tony Perkins (Australia) … http://onlinelibrary.wiley.com/doi/10.1111/hdi.12290/pdf

All this has created something of a dogs’ breakfast from my answer, but I think it is the best I can do.

In the long run, and in my view, the machine you choose and use MUST be one that is familiar and acceptable to your home team. You would be foolish to choose in isolation from your medical and nursing team … though when I say ‘you choose’, you may not have as much say in the decision as you might wish. If you use a system they cannot back up with local expertise and on-the-spot assistance (as we do here) and if you use a system that they do not know or use themselves, in my view that is a path to trouble. In the end, what matters is the quality of the dialysis you get … and that is prescription-driven, not machine-related … though it IS true that some machines are, as a result of their design limitations, somewhat limited in the range of prescription(s) they can accomodate or provide.

And that last sentence matters, and matters a lot.


#6

Thank you so much for taking the time for such a
thoughtful response!


#7

Hello Dr. Agar,

I had one follow up question for you. From the Doctor’s perspective, when you have weighed all of the different factors you mention above and are ready to order the home hemo machine. What is the process? I am assuming the Doctor orders this for patient. Have you found that doctors are typically making a repeat order for the OneStage (device names are interchangeable) device or is the benchmark the Fresenius 2008k@home? I know there is not a one size fits all solution, but does one of these machines check more boxes for most Doctors? I guess market-share information would help answer this question. I guess I am curious about consensus from Doctors more than anything else. Thanks again for your time and all your work in this area.

Eric


#8

I suspect you mean NxStage …there is no OneStage system. As I have responded to others extensively about the pros and cons of various systems, rather than writing it all down again, can I suggest you use the search function at these message boards, type in NxStage, and read what is there … perhaps especially the exchange from May 2014. My views have not altered. But … again, as these are my views and may be different from those of others, always take the advice of your own team. Internet advice and Internet advisors both have a certain value, but that value pales against real people, in front of you, sharing their own experience. So … by all means read my many, many discussions on machines and systems, but, above all, talk to your team!


#9

Of course! Thank you!