Pls. read (esp post #4) + contribute

As I fly to Seattle, I am trying to see how we can spread these pages to more patients on dialysis … and not only to you, the ‘home’ patients.

Unfortunately, you are the sparse few who seek further information at this site … the message boards for PD and HD, the Ask our Experts sites for Beth, Stuart,Judith, Leanne and myself, the wealth of information and straight answering that we try to give + all the amazing time, energy and commitment of Dori, Brian and their team. The stuff we try to do for ‘dialysis’ seems to be on offer to so few, yet so many others might benefit if they

(1) knew
(2) experienced
(3) joined in

I have always believed that if my patients understand ‘stuff’, they do better. If they do better, then the whole outcome balance tips for the good. It may not always mean a better outcome for the individual … but, as a whole, I am convinced that it would be so.

So …

Your few and faithful readers out there … you who ache to learn and know and understand more about what the hell it is we DO to you with that damn machine and those horrid schedules and rules and restrictions … … please, start thinking about how others can be drawn in.

You all come from units and have home training teams. All your home training teams are connected to centre-based systems, somehow, somewhere. How do we bring them to the table.

Its kind of like affirmative action! It can only come from you taking a pro-active stance with your home teams … badgering, hounding, making a nuisance of yourselves! The name ‘Home Dialysis Central’ is perhaps a disincentive for facility-based patients to think that anything there might apply to them … but it does! All you have to do it tell them that! It’s more than home dialysis-specific. The information we give is applicable across the who dialysis spectrum. Make it happen

So …

Lets have some action - not just closeted Q&A’s from the ‘tip of the iceberg’! Lets get on the diving gear and work out how we get to and map and explore and draw in ‘the underwater bulk’ we arent seeing.

Its a conversation we just have to have!

John Agar

That’s a great idea Dr. Agar! It will be really invaluable for every patient on dialysis to have access to this information and your views on many of the issues we face on a daily basis.

I have one suggestion - many of us are members of other forums for the general dialysis population rather than just the home patients. We could post there letting them know about this forum.

Also, those of us who were in-center till we got our lives back by switching to home hemo could try and go down to the centers we were linked with and spread the word through techs, nurses, and by directly talking to the patients we know.

Do you think that would help?


Dear Kamal

I think that is exactly what would be useful. Anything that will help more than just the few who read these pages is, in my view, worth doing.

John Agar

Dear All: Please help …

A month or more ago, I posted this thread.

I was seeking YOUR input …

[B][I]1. Do (have) you found this Q&A format helpful?

  1. Is it something we should continue with? - the agreement I made with HDC was to trial it for 6 months then decide if

(a) to continue

(b) to allow a natural death

  1. How could it be made better … more useful … more effective?

  2. Are the answers I (and others) give sufficiently clear … should I (or others) be more concise or explain even more?

  3. If you ‘like’ our new initiative … how then can you see it helping others …

a) what are your ideas to improve it

you[/U] make to broaden its availability to others … especially those on conventional dialysis.[/I]

After all, good dialysis only comes with good understanding … and good understanding is what we have tried (or are trying) to offer here at HDC.

Please … your thoughts and contributions.

This is not aimed at self-aggrandissment but with real intent to improve the understanding of as many dialyzors, regardless of modality - home or facility.

Please take time to contribute your thoughts

Dori, her team, and I would appreciate it greatly.

John Agar

Hello Dr. Agar,

First, to answer your questions:

  1. I have found this Q&A format extremely helpful. Your inputs add an amazing perspective for me and my nephrologist. We are often perplexed with the issues that nocturnal dialysis bring up especially since there is so less data available. Your experience in this modality helps us see things from a different perspective. Definitely, this forum is very, very useful.

  2. Yes, definitely, this forum should continue. I would be quite lost without it!

  3. I really don’t know if anything can be done to make it more effective. It is great in the current form.

  4. Your answers are extremely well written. They are detailed enough to provide complete clarity.

  5. On what can be done to make it reach more people - the people who visit this forum are mainly people who are on home dialysis. The answers that you provide are often applicable to the general dialysis population as well. So, if there was a way people could come to this site and go through this forum, it would greatly help. For this, I was thinking if people could link to this forum on their blogs/forums/websites, it would be great.

I think non members can also access this site, right? So, I am going to provide a link to this forum on my blog and website so that people know about this forum and can start going through the posts.

Thanks again for your efforts Dr. Agar!


  1. Tremendously helpful! There has only been 2 times in the last decade that a dialysis professional answered patients’ questions in a format such as this. One of those times was a renal nurse who singlehandedly fielded questions for well over a year. I am proud to say that I am the one who suggested that effort just as I did here. She did a gallant job! The other case was that of a nephrologist, but in his case, he was lax about getting back to patients and his effort went kaput very shortly after it began. Patients very much need ed. at the teachable moment in as much as possible. You have done a great job in that regard and we do understand your needed times off for vacation, holidays or conferences.

  2. Absolutely the Q & A format should continue! To me, and I’m sure many others, this is a highly effective form of dialysis ed… I wish more dialysis professionals would step up to the plate as you and the others here have. Patients and all others in the dialysis community come to this format, because we are in need of accurate dialysis ed. If we sufficiently got that info from our teams there would be no need to come to a format like this day in and day out. The #1 reason we are here is because we do not get enough education and must fill in the blanks of which we have many. It is not that dialysis is that difficult a subject to understand, but that education must be readily available and accurate. Patients/caregivers are on every kidney site asking other patients, and the rare professional that comes on, for help to understand their txs as their dialysis professionals are rushed and often can not answer basic dialysis questions. There are many other things patients would like to do with our lives other than come to sites out of desperation for dialysis ed. But until more dialysis professionals are more devoted to developing their own renal educations and to educating patients, there will always be a strong need for a format such as this. Yes, our dialysis professionals should know us well and be the best qualified to educate us and answer our questions, but that is not always the reality. In the amount of time this format has been available, I have had many concepts straightened out for me where there had been gaps in my understanding. This very simply is just what we need, but don’t often get, clear, accurate dialysis ed. I have been studying dialysis for years when had I been educated like this, I’m sure the time necessary to cover the material would of been very minimal at most. Dialysis does not have to be so complicated. It’s the lack of ed. and the misinformation that makes it so for so many patients.

  3. The ed. delivered has been very effective. The whole point is that someone is here to answer our questions.

  4. The answers provided are sufficiently clear and very insightful, however, sometimes more of an explanation is needed. I know as I read provided answers, I sometimes see what is shared as one angle to my question. This is because as a patient, not a professional trained in this material, I am limited on background info. When I ask for more info. so I can get clarification or another angle I do not have in order to see the full picture, this does not mean that I thought the original answer was insufficient. Not at all - I might be thrilled to at last be seeing into the subject for the first time or in a way I have never seen before. So, I just need more examples or more angles in order to put the whole thing together. I, personally, ask a lot of questions. I was taught, and firmly believe, the old saying, “there are no stupid questions just stupid answers”. It is not always possible for me to go back over all the previous info. as I do not have the physical and mental ability to do that. It may be just one or two angles/concepts that I am lacking and by asking further questions it then begins to come together for me. This is my learning style. Others may need far less. So, if a student like me asks more questions please realize we have a reason and rather then seeing it as an insult, see it as a compliment! Also try to grasp how difficult it is for us at times to assimilate this material. Due to our disease, we are not mental giants so to speak. We may be mentally astute, but have to constantly battle not feeling up to par up and down. Even if one should receive the best nocturnal txs, it does not guarantee bold health that allows one to climb the heights of ones chosen career or desires. Most of us still have to fight for every inch of physical well being so that we can function enough to enjoy life while not be able to compete on the level of one who has normal kidney function. We are grateful, very grateful, for all assistance provided. Any answer is better then the most common answer many of us get in our units, “dunno”. So, just see it as joyful bliss when more questions come in - it just means we are learning, this is wonderful, at last we are seeing, and when we see, we begin to thrive…

5 a.) To improve this info, just keep it coming and continue to use your creativity to open eyes in any way that occurs to you. You do fabulously well in this dept. Dr. Agar. Others have a more straight forward teaching style. It all works. It is the accuracy of info., no one knowing it all, each coming from his specific area of expertise, that brings it together for patients.

5b.) This is the million dollar question! In the many years I have been on dialysis, and I have been in a number of units having lived in various part of this country during this time, I have rarely met another patient in-center who was aware of what occurs during the dialysis process. Even patients who are of professional status in their fields have just placed out their arms and gone to sleep. For the life of me, I have never understood it! The only place I have encountered involved patients is on the net, and even then, the numbers of regular posters are very minimal. The only saving grace is that many more seem to read then to post. There are a number of reasons for this that I have observed. Suffice it to say, this is a situation that has been ongoing. Many have tried to change it without success. Just know that your efforts are not in vain. I would say try not to gauge the successfulness of this forum in terms of numbers. If you help one patient to have a better life, you have achieved something great. And it will be more then one and might be quite a few, although not hundreds or thousands. Each patient who grasps this material is then in a position to touch more lives. I, myself, have reached out to one patient after another over the years with my hard fought acquired knowledge. Often, I never hear back from them, but I know that I have planted a seed of needed info. and it is up to them what they do with it. I see our system as flawed as not enough responsibility is required of patients/caregivers and there is not a spirit of excellence amongst most care providers. I don’t think there will be an abundant response on any forum until that changes. But this is a site that can be proud that it accomplishes much good. Lives have been changed through the message here that it is possible to get better dialysis. This is quite an accomplishment and service to the renal community that those who give their time to should be most proud of! If, lets say, even 25 more patients became active participants would there even be the man-power to educate them? It would be nice if there was more participation from yet more professionals, something that has never taken place in the years I have been on the net. And my final thought is, an updated version of Kidney School getting more specific on each aspect of kidney disease and the dialysis tx., written by a collaboration of professionals, including patient insights, might be the spark that enlightens more patients, caregivers and the professionals whose job it is to improve patients’ health to succeed at dialysis and to be more active participants in their respective units, the net and other educational venues. I have long thought that the most needed tool of all is a course on kidney disease/dialysis that plainly spells out how good dialysis is done would do the most to open eyes. Because understanding the tx. should not take forever or be overly complex causing so many to be apathetic. The subject can be taught in a relatively short span of time, the mystery removed, thus allowing many more to become active participants in their care, a snowball effect that I believe would change the face of dialysis.

Thanks Jane, for your thoughtful response.

I guess it is Q 5 that is the nub of the problem … the ‘how can the great mass of patients who arent exposed to education be better reached?’

I wish I knew how to achieve that outcome. An educated, knowing patient seems to be feared by some, somehow, but (I) we find it a good way to ensure good outcomes and a higher home HD rate.

Currently, we have 109 HD and 22 PD (mainly APD) patients in our small, regional city program (131 all up) … Geelong is a regional town of 225,000 with a single public hospital-based renal service (as are all Australian renal and dialysis services) … and of the 109 HD patients, 34 are on home HD (all nocturnal, all self-dialysing, none carer-dependent, 9 are lone-dialysing - without a carer).

All patients here get equal treatment - and insurance status in Australia isn’t considered an issue as we have a universal health system - not unlike (in many respects) those of the UK and/or Canadian. There are differences - but not important ones, from the point of view of either the receipt of (the patient) or provision of (the service) dialytic care.

On that score (and here I digress from the topic of this post) I simply cannot understand how you, in the US, can have gotten yourselves into such a mess over health. It defies intelligent understanding … but yes, that is a different issue to this thread and I do digress … sorry …

We (think) we achieve our high HHD penetration and uptake - at least in part - through a good pre-dialysis education program and through well-informed patients.

Agreed, not all our patients avail themselves of the information we provide - that is their choice - but most do, at least to a degree - and the way we think we achieve such a high uptake of HHD is through a patient-led, patient word-of-mouth spread of information that ‘home works’ and ‘home-is-good’.

Home HD must be well-supported and funded and, admittedly, our programs and funding broadly allow us that luxury in Australia … but only through our direct input to government through our health departments - a function which we actively sustain … as, too (and to give it huge credit) is our health system. The secret is cooperative and inclusive planning, not disagreement or recrimination.

I fully agree that education and information-sharing … good and bad - as the information can be confronting (especially when discussing outcomes/chances/future prospects etc) … is the way forward.

But … how do we provide/achieve that for the multitude? and not the few? … that is the key question … and it is the question about which I hope that some of you may come up with some bright or fresh ideas.

John Agar

And that will be coming next month, Jane! In May, Kidney School - will be relaunching with updated info; a new, fresh look; and HOME options integrated into MOST of the modules. Anywhere that treatment option touches lifestyle, we talk about how much better folks might feel if they got more dialysis. I doubt that we have as much detail as you would ideally prefer. :wink: But Kidney School is a terrific resource for folks with stages 3-5 CKD, especially those who are new to it and need a framework for information.

Also, Dr. Agar and I are working on a book. So, perhaps folks here can help encourage him to complete it! :slight_smile:

Bear with me, ignore the waffle, there generally is a point and hopefully some of what I say is useful.
…so to question 3… I believe in a holistic approach, to the degree that without it we are wasting our time. I think information on the ‘body’ is easy for people to access, but the mind is often ignored, or people are referred on, but never the twain shall meet.I think it freaks health professionals out because then they might have to address their own approach.So as a consequence, what do people who are affected by the ‘body’ information provided do with its effects. For example I spoke to a doctor who informed me that she knows what it is like to be on a a diet as she apparently was on a permanent one! The comparison is so ridiculous I knew there was no point in entering into any further discussion if she lacked that basic insight ( Sorry I am not having a go at doctors here, some are great some just aren’t, and no-one expects drs, nurses etc to get it right all of the time). Anyway the point I’m trying to make is as a dialysis patient, if you are on restrictions, you know what you can and can’t eat and drink. Unfortunately it is everybodies favourite topic to constantly berate dialysis patients with, so believe me patients have the knowledge!, and with that generally comes fear and guilt without any input from the healthcare professionals needed…oh my God if I eat this tomatoe will I have a heart attack…if I have cheeze will my bones disintegrate…or another reaction at the other end of the spectrum (obviously there are lots of differing deg rees in between)is quite frankly my dear I don’t give a damn, pass me a litre of coffee with that banana sandwich, delicious!.. ok so I am being slightly tongue in cheek here. I think it would be good to have a psychologists forum input. It may be trickier and some posts would have to be confidential, but they could be answered as topics.

I’d love input from a dialysis machine technician. I can’t be the only patient that has had difficulties with their machine! I have huge probllems with water pressures flucuating and dropping so my RO machine keeps cutting out. It is threatening to end my dialysing at home which is devestating to me. I have had to talk to lots of different people using terminology that means absolutely nothing to me, although I am able to talk about bars of pressure now LOL, so I guess I am learning! But it would be great to have someone who could make suggestions about different things I could try.(Actually I should probably put this in a separate post but it does emphasise the point I am making so… In Australia, there must be issues with water pressure, what have you guys done to work around this Dr Agar please?)

  1. Are the answers I (and others) give sufficiently clear … should I (or others) be more concise or explain even more?
  2. Sometimes I would like a more detailed answer but I appreciate those answering queries have to be careful not to tread on other healthcare professionals egos… I mean toes! I also am a healthcare professional myself, and I would hate to think it was my ego preventing me listening to someone elses opinion. It could be a valuable learning experience. What I mean by that is when people are advised to go back and ask their own team to answer their question. I think people ask you guys these questions on the forum because there is a safe space between us, an anonimity of sorts. There are lots of reasons why patients feel the need to ask an external professional: Sometimes its a lack of confidence that patients don’t ask their own team… its because they had a bad experience with someone they dealt with regarding their health… its fear of sounding stupid…some patients have asked so many questions they are made to feel as though they are a nuciance!! etc etc. Whatever the reason, and regardless of its level of rationality as percieved by myself or yourself or anyone there are patients with questions that need answering. This forum provides that to everyone, We are all equal here.
    I find your explanations clear absolutely.

Back again with question 5 anon.

Hi Sinead,

I’m not sure we’d have enough questions about water treatment to warrant a whole board for it, but we do know experts who can answer questions about it. So, post those sorts of questions to the HD Patients’ board, and if we can’t answer them, Beth or I will find someone who can. I’ll have to think about a psychologist. There was someone who has helped us before who’d be very good, but I’d need to do a bit of homework to remember who he was…

Thanks, Sinead

Your answers are much appreciated and in my mind.

I will certainly think about all the points you have raised … answers like yours are exactly what I was hoping to get from you (and others too) by asking the questions I did.

I know it can be annoying … and kind of seem a bit of a ‘cop out’ … to say, as I have said from time to time, that … people (should) go back and ask their own team to answer their question. You are right that the strength of this and similar sites is exactly because there is a safe space (or sorts) between us … an anonimity … a true strength (for both questioner and responder) in this educational mode …

But, when questions where specific patient details or circumstances remain unknown in this anonymous internet format (or it seems to me that they do as I try to answer questions), I begin to feel on uneven ground in my answer and, as a result, may ‘cop out’ and suggest a return to home-unit sources as a ‘default position’. I do my best to remain generic … though, I agree and admit that I have strayed in some answers into personal comment - such as the ‘advice’ given to a man some 2 months ago about the withdrawal of therapy where such personal pain came through that some personal involvement clearly came through on my part.

It is your (collective, I hope) answers to Q 5 that will interest me … and I hope that a few more than just you and Jane will venture a response to this one …

One of the clear problems that exists - as regards Q5 and the spreading of use beyond just home HD and nocturnal home HD - is the names of this site … ‘Home Dialysis Central’ … and of my website … ‘nocturnaldialysis’. I suspect that it must seem to many (or most) - even if they scout the net for information - that the information available is just for HHD or nocturnal patients. I am aware of this issue … but our site names are as they are, and I see no easy way to alter this. Perhaps Dori may have some ideas …

As for the book - yes, and I have been remiss (sorry, Dori) as I tend to push it to the last thing for the day to do - and it should rightly be the first! Though not a fully valid excuse, I have had a fair schedule of original abstracts and manuscripts to write for our local Australian and Asian-based literature (which, sadly, few in the US seem to read) on environmentally sensitive dialysis … water conservation practices and our experimental and (hopefully) ground-breaking steps in Geelong into the uncharted orbit of solar powered dialysis systems. This is something that, to our knowledge, has not been done - at least not been reported - before, so we are kind of excited by the potential of this area and our modelling seems strongly positive and effective.

As this schedule of paper-writing looks pretty much over for the moment - Dori … I hear you!

The rest of what you say, I agree with. I will continue to try to be a simple and straightforward as I can in my answers … but now and then, if my frustrations or weariness show through, I hope you (and others) will forgive any human foibles that I allow to slip through, if and when they do…

John Agar

Hi Dr Agar, Dori and friends, thanks for the replies.
Whilst doing this I have realised a few things about myself: It is much more difficult than I realised to write and get across what I want to say, then when I am having a conversation with someone. Any grammar learned in school has apparently been eradicated from my brain. And finally I can nolonger spell! for which I put most of the blame on spellcheck, and much confusion between American spelling and English spelling versions!!

Still though will push on and have a go at question 5…
If you ‘like’ our new initiative … how then can you see it helping others …
a) what are your ideas to improve it
[b) what contribution can you make to broaden its availability to others … especially those on conventional dialysis.

Ok {b} seems easier so that first. In Ireland we have a great association the IKA and they have a monthly magazine called ‘Support’with lots of good info in it. Check out the website, it’s worth a look. Anyway I could write a letter telling them about our forum, the expertise available, the webinars and info sheets etc and how useful I have found it. I’m sure there are similar publications in lots of countries and they could all be written to. I appreciate we have quite a small country here so it is easier to address the masses. The public face of the IKA is a guy called Ryan Tubridy and Ryan is a peaktime presenter on tv and radio, so maybe he would give it a mention. There are IKA groups all over the country that meet on a monthly basis, I guess they act as a support network for patients and families affected by renal disease, and they do fundraising and awareness raising campaigns. There’s an AGM that an announcement could be made at. I am making lots of assumptions here re other peoples co-operation, but I find mostly people are supportive of positive endeavours from enthusiastic individuals (and I can be very enthusiastic LOL ). Once this is done, it would need to be continued periodically maybe by publicising in exactly the same way a particular post, depending on who you wanted to target for say that month or bi-monthly or seasonally (hmmm we have 4 of them and it rains generally for all 4!!).
Ok I’m getting excited by this and really what could be done in an ideal world, pity there’s not a budget involved LOL. Still lots can be done without money. Word of mouth is a very powerful tool, and the Irish love to talk, gift of the gab and something to do with a stone in Blarney apparently!!
My only fear is that for an incentre patient, reading on the site about all those lucky people on home dialysis, maybe wanting that option and then maybe to realise it might not be an option for them would be upsetting and frustrating. So incentre dialysis would have to be presented in a positive light, as a realistic, and for some, as a preferential option. I realise the positives of having information far outweigh any perceived negative effects. I know the aim here is to provide information and this is hugely beneficial, but it can’t be forgotten that people accessing that information, are human beings that are part of a ‘ kidney world’ through absolutely no choice of their own.

Ok that’s me done for today

Dear Sinead

Your exchange of views and ideas is exactly what I had hoped might come from a ‘feedback loop’.

I guess your suggestion about impact through groups such as your national patient association is one for Dori and her team to consider, but I think your suggestion of making people more aware through national sites and associations is a powerful and useful contribution and suggestion. I will be interested in Dori’s response.

As for your very appropriate cautioning re …

“My only fear is that, for an incentre patient, reading (on the site) about all those lucky people on home dialysis and maybe wanting that option but then maybe realising it might not be an option for them would be upsetting and frustrating”.

… too true!

Furthermore, your observation and sage advice that …

'In-centre dialysis needs to (also) be presented in a positive light, as a realistic and, for some, a preferential option".

… is also very true.

I am a self-confessed extended hour and higher frequency dialysis ‘addict’ of a doc! Simply, I believe it to be best.

As a result, it is often hard for me to keep in mind and to ensure balance … as I should, and as I must … when it comes to my my views about facility care. I will work on this balance … I promise!

I agree entirely that I should (as you did) recognise that the majority of patients will only ever access facility-based options and that I should be (a little) more ‘circumspect’ in my enthusiasm for a ‘more is better’ approach in such a way that I do not make those who cannot hope to get ‘more’ or access ‘better’ feel uncomfy at this site or disadvantaged in their treatment.

As I look back at some of my answers, I cannot but help think I may have had given this impression, on occasions.

Though I will not change my ‘more is better’ viewpoint, I will certainly try to ensure that all readers, from now on, whether coming from a facility-based program or from the home, are made to feel as comfy as I can make them feel with the information I try to give.

Q&A answers are not an easy art … and I am ‘learning on the job’. Your thought-provoking responses have been of enormous value and I thank you so much for them.

John Agar

My only fear is that for an incentre patient, reading on the site about all those lucky people on home dialysis, maybe wanting that option and then maybe to realise it might not be an option for them would be upsetting and frustrating. So incentre dialysis would have to be presented in a positive light, as a realistic, and for some, as a preferential option. I realise the positives of having information far outweigh any perceived negative effects. I know the aim here is to provide information and this is hugely beneficial, but it can’t be forgotten that people accessing that information, are human beings that are part of a ‘ kidney world’ through absolutely no choice of their own.[/QUOTE]
You are right that some people do get upset and frustrated hearing about the benefits of home treatment when–for whatever reason (and, in my experience, these tend to come down to FEAR)–they choose to stay in-center. I know that I have made some people angry by insisting that all patients NEED to know that more dialysis is better. It’s not really that dialysis has to be done at home to be superior. There WAS one paper by Saner that found double the survival when standard 3x/week HD was done at home. But, mostly, home is a setting where PD and longer and/or more frequent HD can be delivered more easily and conveniently. (It was too long a mouthful for us to name this site “Longer and/or more frequent dialysis” ;-)).

IMHO, no-one should EVER be receiving 3x/week HD for less than 4 hours per treatment.. I believe the DOPPS international data have demonstrated among 23,000 or so people, that the absolute minimum treatment should be 4 hours–and that each additional 30 minutes reduces the relative risk of death by 7%. (Saran et al). And, I believe that Bleyer has also demonstrated the 50% increase in sudden cardiac death on the day after the 2-day dialysis “weekend,” or what Dr. Carl Kjellstrand calls the “killer gap.” So, I have a very difficult time with the idea of portraying standard in-center HD as anything positive. It could be made positive. If treatments were routinely longer in the U.S. and were done every-other-day to avoid the “killer gap,” I would feel better about it. In-center nocturnal is an excellent option. Short of that, I believe we are dooming people to a poor quality of life–and a shorter one–than they would otherwise have with ANY other option. This is in the aggregate, of course. As they say, “your mileage will vary,” and I do know of a number of people who have survived for a decade or longer receiving standard treatment. Even then, though, I worry about their nerves, bones, and joints, and the people I know who have done this (some were good friends) are often quite frail.

We started this site because we are passionate about ensuring that everyone knows as much as possible about what it really means, to every aspect of life, to choose a treatment for ESRD. In most cases when I explain this to people, I’m told: “Well, home dialysis seems like a no-brainer,” or, “why would anyone want to do in-center?”

First of all, may this thread never die until it reaches it’s intended goal!!! Secondly, congratulations Dr. Agar for being the first nephrologist to have the courage to come on the boards to say, in essence, enough is enough, it is high time a solution be found to the glaring problem of the U. S. renal community’s apathy and inability to work together for patient care. I, myself, as a patient, have more to contribute out of my own been there done that personal experience. And it is my prayerful hope that this thread reaches far and wide so that many others will jump on the freedom train.

To add to this train that is steadily building speed, with much more to come, the following is an article posted at Dialysis from the Sharp End of the Needle:

Why patients can’t seem to follow doctor’s instructions

By David L. Rosenbloom

Patient compliance with medically prescribed drug regimens is, and always has been, a major factor in how effective physicians are in treating disease. Compliance has been monitored as far back as the time of Hippocrates. When the effect and dosages of various potions were recorded, so were notations of when and if the patients had taken them or not. Yet over two millennium of recorded medical history, compliance has continued to be low.

What the studies and anecdotal evidence show
According to a 2003 report from the World Health Organization, “Adherence to long-term therapy for chronic illness in developed countries averages 50%. In developing countries, the rates are even lower.”

A 2005 report in the New England Journal of Medicine (NEJM) Adherence to Medication states that physicians have difficulty recognizing patient non-compliance and when they take measures to improve patient behavior, the results have been mixed. “Simple dosing (one pill, once daily) helps to maximize adherence, particularly when combined with frequent reinforcing visits, despite the fact that 10 - 40% of patients taking these simple regimens continue to have imperfect dosing.

The same NEJM article points out that only about 1/3 of patients come close to perfect adherence. Even in controlled clinical drug trials, average adherence rates of 43-78% are reported. Poor adherence accounts for worsening of disease, death and increased healthcare costs. “Of all the medication-related hospital admissions in the United States, 33-69% are due to poor medication adherence, with a resultant cost of approximately $100 billion a year.”

Why are these compliance numbers so low, even in today’s environment of highly effective drugs with proven success records? Patient attitude is to blame. Most patients are passive when it comes to their own healthcare treatment. They generally want to please their doctors, who are normally viewed as experts and authority figures. So they tell the doctors what they believe their doctors want to hear, i.e. “Yes. I’ve taken my medicines as directed.”

When patients are questioned about why they aren’t compliant, the NEJM article lists the following excuses: “forgetfulness (30%), other priorities (16%), decision to omit doses (11%), lack of information (9%), and emotional factors (7%); 27% of the respondents did not provide a reason…”

What’s the answer?
I think is has largely to do with a failure to include the patient in the treatment process. I know this from 8+ years of my own dealing with kidney disease. The more I’m involved, the better my doctors educate me, the healthier I am. This is not pie-in-the-sky philosophy. Anecdotal evidence other than mine shows this to be correct. Patient passivity leads to non-compliance, non-adherence, or what many of us on the patient side prefer to call non-accommodation.

In the kidney dialysis world, we call it “learned helplessness.” If you are unfortunate to have kidney failure, in most cases, your doctor or nephrologist will automatically place you in a clinic where you will receive inadequate treatment – three, 3-4 hour treatments of dialysis a week. Your only responsibility is to show up, take your meds and follow an impossibly restrictive diet. The medical staff will do the rest per the doctor’s instructions. Unfortunately, many people who are placed on this in-clinic regimen, will not improve nor survive very long.

Perception and education
Those of us who have taken back control of our disease treatment, have escaped from this outmoded dialysis regimen and switched to more frequent modalities, most of which we do at home in familiar surroundings with the aid of loved ones as caregivers. Many of us have done it alone. The technology is available. The problem is that most kidney patients are not educated about the choices available to them.

Both articles I have quoted above note this phenomenon. The WHO reports states that “practitioners must have access to specific training in adherence management, and the systems in which they work must design and support delivery systems that respect this objective. … For the effective provision of care for chronic conditions, it is necessary that the patient, the family and the community who supports him or her all play an active role.”

So where do we start to correct this imbalance. I think it’s with the perception of the roles that patient and healthcare professional play in the treatment. We can start by eliminating the medical terms “compliance” and “adherence.”

“Both terms are imperfect and uninformative,“ states the NEJM article. I wholeheartedly agree. Compliance and adherence are so one-sided, i.e. “you will do as I wish - no questions, no contradictions. Just be a good, little patient and do as Doctor says.” This leads to patients being passive, uninformed and intimidated. It places the entire blame for not understanding or not following orders on the patient, who is most likely lost in a maze of high technology and arcane medical terminology.

Accommodation on the other hand implies an action I do willingly, on my own initiative. I’ve always felt that with kidney failure, our brain has to take over the management functions our kidneys did naturally. I realize this is a very intellectual view of a life and death matter, but it is what must happen if you want to survive and regain control of your life. You must “think” about things that your kidneys no longer do, like regulating and eliminating excess fluids, taking supplements to replace natural hormones produced in working kidneys, and avoiding certain “bad” foods which will significantly worsen your health. You must learn what dialysis can and cannot do for you, and then begin to accommodate your lifestyle to those needs.

It’s not rocket science, it’s common sense that’s been honed by education. And this is where the physician and the medical staff must play a larger role. The kidney patient, or for that matter any patient with a chronic condition, must be told the basic facts up front, at the very beginning of treatment. If the patient is incapable or too ill to understand, then the spouse, family or caregiver must become the patient’s surrogate. And at each important juncture in the process of treatment – from diagnosis to dialysis and hopefully transplant, the patient and the caregiver must be a critical part of the team. They must understanding the procedures used, the drugs proscribed, and results of tests. It will take more time and more effort than we have been willing to employ. But it will result in better outcomes, a goal we all seek.

Posted on March 21, 2010 at 09:04 PM in CKD Education, Renal Lexicon, Writer: David L. Rosenbloom | Permalink

Yes, Jane, I have seen this. I keep my eye on Bills “Dialysis from the Sharp End of the Needle” website and had I had read David Rosenbloom’s post there. I felt a great deal of sympathy for the “non-compliant” patient as I read his post, as it mirrored my own thoughts and views exactly. I feel that sympathy not only for the complexity of the medication ‘we’ expect patients to handle and ‘be compliant’ with and the ‘abandon’ with which we order additional medications for our patients but especially for the ‘learned helplessness’ so many of ‘us’ expect from our dialysis patients … though I might describe this slightly differently as an ‘encouraged’ or ‘required’ helplessness … and the inevitable blame and shame game that is unthinkingly and often unwittingly played out by so many dialysis professionals.

I think you may have already have read some of my views and threads on the inequalities of the concept we have dubbed ‘non-compliance’. In one of these threads, I have focused on the tendency for some dialysis health professionals to always blame the patient … yet never blame themselves or the treatment they administer. It is much easier to blame the patient for non-compliance than to grapple with the concept that the treatment that is being delivered may be inadequate, too short, too ‘bazooka’, too blunderbuss, too brutal … or just wrong.

I have said here many times, at this Q&A site and elsewhere … and I know some or many colleague dialysis professionals may bristle at this but I don’t resile from my views - that non-compliance is far more commonly the result of process inadequacy than of patient bloody-mindedness. Yet how often it is that we reverse the blame game (a 'blame which might more correctly be aimed at ‘us’ and not ‘them’) – accusing a patient, who has little or no comeback … labelling them, unfairly, non-compliant. Those that do ‘resist’, argue or put up a fight are then often sent for psychiatric or counselling care or required to sign ‘codes of behaviour’ when, in truth, it is ‘we’ who are as much or more at fault.

I have used this example several times before … but here I go again … as I think it illustrates what I mean by ‘bad process’ and not ‘bad patient’:

… a patient comes in with an excess weight gain

… after accusations of non-compliance and a hefty bit of staff vs patient beration (is that a word?), yet another short treatment with an impossibly high UFR is prescribed in a vain attempt, in a far too short dialysis time, to remove the excess fluid that has caused the excess weight gain.

… as a result of the high UFR, there is a rapid contraction of the intra-vascular volume.

… two things then happen:

(1) the patients’ BP falls, the eyes roll back in a ‘flat’ and saline is given to ‘revive’ - giving fluid when the entire ‘oomph’ of the far-too-short session has been aimed at removing it!

(2) the high UFR exceeds the ability of the extravascular space to replenish the rapidly falling intravascular volume and, even if a ‘flat’ is avoided, the contracted intravascular volume is the ‘switch’ for thirst (Basic Physiology: Part 1)

… thirst is a primal, irresistible primitive survival mechanism for all living organisms - in animals (and that includes us) we call it thirst … but in any living creature, we might use (sometimes incorrectly - though that’s another story) the word ‘dehydration’.

… the acute volume contraction of ‘bazooka dialysis’ (fast, hard, unsympathetic, short-hour, low frequency dialysis) results in a raging thirst.

… again - remember - thirst is a primal, irresistible, basic instinct. None of us can resist it … when activated, it is all-consuming!

… and so, at the end of the all-too-short dialysis, the intravascular volume having been tightly contracted, the patient is discharged home (usually with a parting admonition at the door) with a raging thirst and their primal, irresistible survival mechanism fully switched on.

… surprise, surprise … the patient drinks excessive fluid! Who wouldn’t? I would! You would! Thirst is a mechanism that preserves the organism. Few (if any) can resist it!

… and, fearful and guarded now of the next ‘berating’, the patient fronts up for the next dialysis - too heavy, too much fluid on-board, too much weight gain - but, never having stood a chance!

… at the door, to greet, an angry yet poorly understanding dialysis professional

… another berating, another session of angst, anger, resentment, distrust.

… and … what happens? Another short dialysis with an even higher UFR

… and yet another irresistible thirst cycle is switched on.

Is this the patient’s fault? I don’t think so! Is this the processes fault? In my view, yes!

So … why raise and discuss this here?

I use it as an example of the importance of education … and sadly, not JUST of the patient, but of the dialysis professional. I fear (and I wish I didnt have to say this but I do) that staff education is as sorely needed as is patient education!

It all comes back to education. As David Rosenbloom correctly notes, fear (or more correctly fright), misunderstanding, poor education, lack of preparation and poor process - all these and more underpin most of the compliance issues that seem to bedevil some dialysis systems.

I know I keep harping on this - and I’m conscious that I do it but I cannot help myself - but we do not really see compliance problems here in Australia. It seems to be very much a US phenomenon. I’m not trying to be mean, I’m not trying to be judgemental or anti-US or ‘anti’ its dialysis systems but, it simply seems to be a fact. You (in the US) do seem to have compliance problems, while most of ‘the rest of us’ out here in the non-US world don’t. I think this observation applies across-the-board to Europe and Japan as well as Australia and New Zealand - just to single out a few.

This brings me back to the purpose of this post … what is good dialysis education? Do you do it? Do we do it? In truth, probably none of us do it … at least, very well.

However, I intend to answer in more depth regarding dialysis education as, I suspect you already have picked up, I believe in it. Strongly! And, I hope we do it … or at least we try to.

I want to describe to you what we do here - and then you can describe how you educate there in the US.

Sinead (I hope she reads this) could also feed in what happens in Ireland.

Others who read this may want to put their two cents-worth too. Then, perhaps we can build a model for dialysis education that might be usable, drawing on ideas and practices that work.

My reason to discuss and respond to your post from Rosenbloom regarding compliance has been to reintroduce the topic of education and how best it might be furthered.

Okay … this has been a little turgid, but I hope you get my drift.

John Agar

Yes Dr. Agar, I get your drift exactly. This situation is my personal passion, too, because how can anyone who has experienced it turn a blind eye and do nothing. I hope to contact as many participants as I can to contribute to this thread as this is a golden opportunity for much needed change.

Our Dialysis Education System

As I have often discussed at this site, I believe that patient education is an absolute necessity in order to encourage the best out of a dialysis program for any group or individual.

In our medium-sized service (130-150 dialysis patients), we try to start our education program early.

We are, of course, fully computerised (like most services) with a complete and integrated system for our medical records, pharmacy management, laboratory data, radiology, inpatient and outpatient record systems and which automatically emails or faxes (according to individual preference) to our primary care and other specialist teams at the completion of each consultation or episode of care. However, we found the commercial systems almost always cost way too much (again … way too much) and are so ‘generic’ that their functionality for individual specialties or sub-sectors is woeful. So … we built our own, from the ground up. It fully integrates with our Barwon Heath systems but is ‘renal specific’. It actually wasn’t too hard when we got down to it. And it was quite cheap to do and implement. It’s a nifty system. It is broken into separate, broadly similar but slightly different ‘blocks’ to suit the different needs and triggers required for the 5 main areas of our care: general nephrology, CKD management, haemodialysis, peritoneal dialysis and transplantation.

So … we are blessed with a computer management program which we have written ourselves and which works with and for us. It streamlines the progress of our patients - it directs us down planned pathways of care for our various 5 sub-groups … at least, clearly, those who have not or do not present too late. The programs offered by commercial systems were far too clunky for us, far too slow, and they commonly failed to focus on the issues that we felt were important in CKD patient management – whether that management is during the progressive CKD, dialysis, or transplantation phases.

I mention all this for an important reason that comes to patient education and preparation for dialysis. Designing our own system has allowed us to insert warning boxes … ‘to do’ items … at chosen points along the pathways. For example, we have set up our CKD computer pathway such that the computer ‘alerts’ us at several set points along the progression pathway with ‘pop-up boxes’ - beyond which one can not move - until the task demanded by the pop-up is satisfactorily answered or dealt with. Annoying – sometimes – but valuable, yes! It doesn’t take long see their value!

For example (and there are several others not explained here-in), we have a pop-up box at eGFR 25 which requires us to make a decision whether to action a referral to our dialysis educator and/or to our vascular health nurse. It enforces us (the physicians) to indicate at that point whether the primary management direction is going to be towards dialysis (and if so, to which modality and at what site – eg: home or facility): towards pre-emptive transplantation if there is a living donor (and other ‘pop-ups’ force several key decisions and steps to follow in this direction if, for example, pre-emption is chosen … tissue typing, work-up etc): or towards conservative management if it is the shared and agreed opinion between the physician and the patient and his/her family that dialysis (or interventional renal replacement therapy) would not be ‘in the best interests’ of the patient.

Some may not be familiar with the UK/Australian concept (it may be extant elsewhere too) of ‘in the best interests’ … but, in simple terms, we must always weigh up the good vs the bad of anything we do or offer in medicine – and sometimes dialysis will be more of an imposition, an intrusion, than a saviour! Not all people will do well on dialysis. Some will actually do better (and for just as long) with conservative medical care*.

*As a footnote here, it is important to state that in Australia – and I know this is also true in the United Kingdom and Europe – dialysis is not always believed to be a good option. Recent data from the United Kingdom – and our long experience – tells us that (especially) elderly patients … though not always so … especially if they have multiple co-morbidities … will do as well (or better) and will sustain relatively health at a remarkably low eGFR, often for long periods of time, when otherwise dialysis might have been undertaken. In that circumstance, dialysis simply adds rigidity, adds schedules and difficult travel, adds treatment-related symptoms, adds life-style complexity and, often, simple misery, to the life of an elderly patient in return for no useful extension of survival and for no improvement in clinical health status … indeed, often, the opposite. I do not want to extend that thought thread here further as it is not the purpose of this post, but it is important to state that conservative care is a valid approach … and the pop-up at eGFR 25 that our computer automatically delivers compels us to consider that decision.

So … at eGFR 25, for a patient who is destined for dialysis, a decision must be made by the physician and patient, before proceeding further with the consultation, whether to refer the patient at that time to dialysis and vascular health education. The physician may choose to override the decision at this point. That is a pop-up option. As just explained in the ‘footnote’ above, in elderly patients in particular, an eGFR of 25 can be too early to make a definitive decision regarding dialysis, but each time the patient returns with an eGFR of 25 or less, the decision process will be again forced by the pop-up and will again require a considered response.

We have two highly trained, empathetic nurses who are excellent communicators and who have been trained specifically to handle our dialysis and vascular education program and throughput. Our predialysis educator also doubles as our transplant educator and dialysis/transplant program coordinator. The ‘educator nurse’ does not absolve the physician from the pre-dialysis, on-dialysis, or transplant education process – far from it – but (she) serves as a detailed time-unlimited (well, relatively time-unlimited) resource to take the patient and his/her relatives slowly through the process of dialysis modality choice and dialysis impact. Referral at eGFR 25 allows this education to be drip-fed … small amounts given frequently … and usually spans several months.

This process commonly involves several meetings, visits to the dialysis unit, discussions with patients who are already on dialysis … we have a selected group –home HD, facility HD, PD, transplant etc – who are prepared to share their journies and who understand the uncertainty that a new patient faces. Where possible, we slowly go through the dialysis process so that it is demystified through slow education and heavy reassurance. Clearly, all our staff know and trust and communicate with each other well. We know each other’s strengths (and weaknesses). Our process seems to work.

Not every patient avails themselves of the opportunities to familiarise and demystify that we offer. That is a woe and a pity. Some simply do not want to know! Sadly, by the time they do want to know, the progression to dialysis is often well advanced and the education process imperfect and incomplete. Though we always regret this, coercion is not part of an educative process. Though we try to persuade, we cannot enforce.

For the majority who do take up the education trail, a one-on-one relationship develops between the educator and the patient on the one hand and between the physician and the patient on the other. Both tend to offer different education ‘packages’ and thus are commonly complementary. In most cases, we achieve that end.

The one-on-one education process is supported by an ’education day’ … a full day held every 4 to 6 months, where any patient looming for dialysis within the next 12 to 18 months is asked – along with their families and anyone else they wish to bring – to attend a full ‘seminar’ day at the university lecture precinct at our institution. There are question-and-answer sessions based around brief formal presentations from our nephrologists, from our dietician, our social worker and our home dialysis teams (both haemodialysis and peritoneal dialysis). After a sponsored lunch (Kidney Health Australia … our NKF equivalent … who give further KHA-driven patient information), there are group visits to the dialysis services (HD) while a PD patient does a CAPD bag exchange and the APD overnight machines (our preference) are showcased and explained.

Patients get a ‘show bag’ at the end of the day. This contains lots of written material – mainly stuff that I have written over the years and which (I) believe is useful … I hope it is! The show bag includes notes on fistula care, volume control and how to achieve it … and the role of longer dialysis in achieving it … notes which explain the modalities of dialysis and explain about the choices, the mix of modalities, the potential movement – one to the other, indeed, all the options. Importantly, some sensitively written information regarding withdrawal from dialysis is included along with an Enduring Power of Attourney form and explanatory note. We have a program here ‘Respecting Patient Choices’ … an advanced directive ‘equivalent’ … which we include and openly, unashamedly explain at the seminar. So, yes, we do raise the issue of the right to withdraw, even before dialysis begins.Why? Well, we have found it best to be up-front about all aspects of dialysis, good and bad.

An integral part of the education day – and we think the most successful part – is a series of presentations by our patients. We have patients prepared and willing to talk about their journey. We unashamedly select, where possible, patients who dialyse in the home. Unashamedly, we biased the sessions to home therapy. We believe that ‘home is best’ and that that is where the patient will get the best dialysis we can give – HD or PD. Though we are careful not to denigrate facility care, we present facility dialysis as an inevitable for those who cannot manage at home but similarly insist that for those who can go home, facility care – in our opinion – is not as good as home care. The strongest advocates of home dialysis are actually our patients. They are awesome at this session. Okay, we hand pick. We cheat! They are very persuasive people. They talk about the problems they’ve had and how they overcame them. They talk about the pride they have in themselves from managing at home. It works!

Part of our care program is to ensure that the patient understands that dialysis is their problem, their responsibility, not the responsibility of someone else. It is not the responsibility of their carer, of their family, or of their loved ones. We do not train carers. Never! A pre-requisite of home care is self-care. But … we recognise that far more patients than most give credit to can train and be safe at home. We only train the patient. None of our ‘carers’ are the prime dialysis performer. This is always the patient. Most carers only learn the ’mute’ button! The relief that the carer feels when realising that they are absolved of the additional responsibility for the dialysis process is immense. You can hear the sigh of relief in the lecture theatre. You can see marriages, relationships, saved! It is part of the reason why we believe our home program has been so successful.

On the other side of the coin, patients take enormous pride in being able to self-dialyse. Though a major concern is needle insertion, our patient population are reassured (heavily) that this is something that can be overcome. We spent quite a bit of time on this. But the best advocates, the best ‘assurers’ are our home patients themselves. Broadly, we use the buttonhole technique for the home patients in our unit … though not all do. To be reassured that by using this technique, needle insertion can be made as painless as possible, also brings an audible sigh of relief in the lecture theatre.

Home dialysis is (must be … deserves to be) presented in a good light. We believe it to be the best and we say it is the best. We do not belittle facility care for those who clearly are going to be incapable of home care – and, in our experience, this is 70% of our haemodialysis population. For them, we encourage longer dialysis time. We explain, carefully, how a shortened dialysis time leads to almost all of the symptoms and ills that accompany a dialysis treatment. Almost all of the patient-related issues dialysis programs come down to that one fact – that the treatment is too short and the consequent effect on the intravascular volume is too great (see 2 posts back in this thread!). Lengthen the dialysis and of these problems fade and disappear. This message is given again … and again … and again.

Though days like these can be confronting, I think our team has become quite adept at conducting the day in such a way as to avoid too much anxiety. The patients who attend these days have already been seen by their physician and by the dialysis educator in one-on-one sessions. The group session helps to show that the patients that they are not alone and that there are many others who are in a similar circumstance. This group session is commonly viewed as reassuring and not confronting.

Again, it is true, that some patients and/or their relatives prefer not to attend these sessions. In our experience, this is relatively rare in, but they are, after all, a voluntary exercise. Again, we encourage but cannot enforce.

As well as dialysis education, our eGFR 25 computer button also generates a referral to our vascular health nurse. This nurse runs our Transonic surveillance program – a program which follows the fistula function of each patient on dialysis each three months. This nurse also arranges and triages our fistula lists and liaises directly with our 3 fistula surgeons. She is trained in vascular ultrasound and performs vein mapping and on-site ultrasound examinations of problem fistulas. She acts as a liaison and bridge between the nephrologists and the vascular surgeons though our 3 vascular surgeons meet with us on a regular basis at a Fistula Clinic once each a month.

The vascular health nurse, after giving appropriate access education, then triggers a vascular ultrasound for the vein mapping of both forearms and upper arms. We have a highly skilled ultrasonographer in our radiology department who performs these … or, sometimes, the vascular surgeon will chose to perform (or repeat) the examination. Long before an eGFR of 25 is reached (for patients known to the renal service), arm vein preservation is discussed and activated – at an eGFR 50 or below. The renal ward marks the chosen arm at admission of any patient with an eGFR <50 (this is usually of the ‘non-handed’ arm) to prevent intravenous drips, blood taking and blood pressure measuring from damaging the veins in an arm that may later be used for native fistula creation. We mark this arm with a brightly coloured purple wristband and our hospital staff has become familiar with the purpose of this band.

After initiating vein mapping, the vascular health nurse then triggers a referral to the vascular surgeon. The appropriate veins are then chosen and marked for the subsequent creation of a native arteriovenous fistula. An elective ‘Category 2’ surgical time (within 3 months maximum) is listed for fistula creation.

It doesn’t matter if a fistula sits, unused, for months or even for a year or two before it is used. Indeed, fistulae mature best if given a longer maturation time and in all but patients with the severe cardiac disease, an in-place functioning fistula will not create any clinical issues. The patient becomes skilled at self-detecting, self-monitoring the thrill in the vein (a good skill to acquire), to avoiding tightly fitting clothing and in caring for the fistula. Early AVF creation allows for any poorly developing fistulae to be identified and to then have secondary surgery – whether superficialisation or any other augmentation procedure – whatever is needed to prepare a usable, robust, dialysis-suited, native AVF.

Through these two educative processes (1) dialysis education (and, though I have not discussed it in detail here, discussion and preparation for pre-emptive and/or later a deceased donor transplantation where appropriate) and (2) vascular health nurse and vascular surgical intervention – we manage to prepare most of our patients for their chosen modality in such a way that, by the time dialysis (or pre-emptive transplantation) looms, both the patient and their family are clear and aware of the steps and processes required for both treatments.

Part of the education process is, of course, education and information about fluids and diet. Clearly, in our program, where 30% of our haemodialysis population is at home on nocturnal, extended hour and high-frequency dialysis, many patients can be essentially free in what they eat and drink.

But, for those bound for facility-based care, an understanding of dry weight, volume and thirst, of the importance of lengthened (or lengthening) dialysis time, an knowledge of the importance of salt and salt restriction, and of bone health, calcium and phosphate – all are covered in the one-on-one education process and by a series of easy-to-read-and-understand handout notes.

We do not profess to have a perfect arrangement. It doesn’t always work out as we would like it to. We make mistakes. We make wrong assessments. We think people will do well and they do not. People who we think will do badly often then surprise us.Our program sometimes falters, sometimes hiccups. It is and will always be an uncertain business.

This applies both to the treating team and to the patient and their families. However, by sticking to our basic principles of identification, education and early implementation, we try to do the best we can for as many as we can.

But … most of the time, it works!

I would be interested to hear the views of others … how do their education programs run? Ours is by no means perfect and we can all learn from each other.

I would welcome ideas and information about the ways through which others have found their passage to dialysis has been eased and their management once on dialysis has been made more tolerable.

Please feel fair free to share any thoughts you may have.

John Agar

Imagine that, U.S. folks–an actual system of care designed to manage a chronic disease. Even though chronic diseases (like CKD) are responsible for 75% of healthcare costs and deaths in the U.S., we have nothing systematic like this. Some healthcare providers have their own computer systems (Epic, based in Madison, where MEI is, is one purveyor) that can “flag” reminders for various conditions, but these are costly and few and far between. Nationally, we have nothing. Our pharmacies are not tied in to our healthcare providers. Nothing ties together information from various doctor visits. It’s sad that a country with as many resources as ours can’t do a better job with something as vital as healthcare.

Dr. Agar,
Did not have computer time today so will get back to your most interesting post when time permits. Submitting more voices/perspectives which come from the comments section of David L. Rosenbloom’s article at DSEN.

Bill Peckham

Accommodation is a much better word. I think language is important and that the best way to approach dealing with a chronic condition is to form partnerships - a partnership with the doctor is central to long term success. Partners don’t comply with one another … We accommodate the facts together to achieve success.

Posted by: Bill Peckham | March 21, 2010 at 09:18 PM
Peter Laird, MD

Compliance is a complex issue. Interestingly, part of the better outcomes in Japan is due to culturally responsive patients who do a better job at adhering to treatment recommendations. Certainly, in a cultural sense, different populations have higher and lower degrees of adherence. Education levels play a substantial part in this issue with functional illiteracy bringing a large part of this issue with patients that simply can’t even read their own prescriptions.

It is also not only medications but adherence to diet, exercise, weight control and many other issues that all bundle together in the issue of compliance. An informed and engaged and self educated patient will almost always do better statistically. It is quite easy to blame some of these issues upon the physicians, but being on both sides of the game, I know from my own experience as a patient that my phosphorus levels are under my own control and are actually fairly easy to keep controlled. I have never been on any PO4 binders with my PO4 never higher than 4.9 and usually it is between 3.5 and 4.0 when my PTH is well controlled. It may not be fun to limit my phosphorus intake, but I recognize that is my responsibility.

There are many physician issues to improve, but as a physician with decades of experience, it is always a joy to work with an informed and personally engaged patient. Trust me, they are few and far between. The blame game is easy to play, but the bottom line is ultimately, patients have a greater role to play in their outcomes in many ways than any physician can do from infrequent visits whether in the CKD population or the general population at large. There are indeed many aspects of the medical profession that could be improved, but finding an involved patient is much more rare than it should be and apparently that is not the case in places such as Japan. It is after all, a doctor/patient relationship. Both sides must operate for the best interest of the patient together as a team. The optimal application of this process is quite rare.

Posted by: Peter Laird, MD | March 21, 2010 at 10:11 PM
Nancy H. Spaeth, RN and patient

I have followed that “Impossible diet” for many years. It’s not impossible and it’s not that hard. Give me a student and I will teach.
As for medications. Patients must be told what the medicine is, what it does and what will happen if they don’t take it. A littel bit of fear goes a long way. Then sit down with them and find a way that is helpful and convienient to take the meds.

Posted by: Nancy H. Spaeth, RN and patient | March 21, 2010 at 10:49 PM
Bill Peckham

Ah but maybe part of the problem are the words adherence and compliance. You learn that accommodating CKD-5D requires that you, the dialyzed, make good choices about diet, exercise and the rest. Accommodate is about weighing options and making choices, the sum of your choice is a good clinical outcome. Adherence/compliance sounds much more like a binary choice either you do or you don’t.

“If any misstep gets the uncompliant box checked then why bother?” is how I think the thought process might unfold. Accommodate allows for people’s humanity. Accommodate allows for negotiation and options. One could accommodate diet missteps by taking another run or running longer. If you are dietarily uncompliant your box is checked and you can only try harder next time.

Posted by: Bill Peckham | March 21, 2010 at 10:58 PM
Peter Laird, MD

Defining compliance is somewhat like defining pornography, you know it when you see it. Very few patients truly get a defined label as noncompliant unless they have actively earned it in my experience. Those few that earned that label truly deserved it with drug use, self destructive behaviors and simply not taking their meds at all and ending up with preventable complications, often life threatening. Most patients simply do not fit into this category.

For the average patient that has difficulty with their regimen, we had a very aggressive patient education system to help them accommodate good practices. In an integrated health care system, the interaction between patient, physician and education team worked quite well for many of our patients on a variety of issues. In addition, for certain disease categories we had diligent case managers that made a huge difference, especially for instance with our CHF case management. There it was a little bit easier since the natural consequences of skipping meds or eating the wrong foods often had immediate and dramatic side effects that caused the patients to self comply. In many instances, that is really the essence of a good case management oversight by taking advantage of self consequential outcomes.

Unfortunately, in the case of diabetes and CKD, often times the temporal relationship between “noncompliance” and consequences could be months or years down the line whereas the CHF population could get into immediate trouble within hours. The teachable moment when a patient is placed on a ventilator because they ate a couple of pickles holds excellent long term teaching results. The same holds true for many situations that a dialysis patient will see. But we did have one patient for instance that had to be dialyzed daily since he refused to eat anything anywhere near to a renal prudent diet. It turned out to be much cheaper than to admit him to the hospital 3-4 times/month. He ended up dying at the age of 38, never attaining any level of self accommodating behaviors in his tragically short life that he brought upon himself. Fortunately, I had less than a handful of patients in my career that fit this description.

The added degree of difficulty we see with conventional incenter dialysis care is that the physician component is often driven by a financial incentive instead of patient outcomes, so the entire issue of compliance in the dialysis unit becomes quite convoluted and skewed compared to many other disease populations. I believe as others that there is a large iatrogenic component to many aspects of usual care here in America. Seeking optimal care from the patient perspective is clearly hindered by lack of optimal care on the doc side of the equation. There is a definite balance in this doctor-patient dance.

The integrated team approach with optimal patient goals from all involved is where the best results are found since doctors simply do not have enough time to do the amount of education needed for most patients to understand their own particular disease process especially one that demands so much patient involvement such as diabetes or CKD. It is the process and the coordinated team approach that shows the best results in most instances.

Posted by: Peter Laird, MD | March 21, 2010 at 11:20 PM

Unfortunately doctors and medical staff want to spend less time, not more. Patients who are motivated seem to seek info and support wherever they can get it. I wonder if there will always be a portion of the patient population who just waits until their feet are to the fire before they take action to preserve their health… or not…

Posted by: Karol | March 22, 2010 at 12:27 AM
Dori Schatell

The notions of “adherence” and “compliance” arise out of the medical model, Western medicine’s focus on ACUTE rather than chronic health conditions. The job of someone with an acute illness is to seek good care and then comply with medical orders. There is no room in the system for patient education–it’s like getting on a conveyor belt and being spit out “cured” on the other side.

Chronic disease accounts for 75% of healthcare costs and deaths in the US. The National Kidney Disease Education Program (NKDEP) has adopted the Chronic Care Model (, in which informed, activated patients have productive interactions with a prepared, proactive practice team. Education is ESSENTIAL in chronic disease, because the patient’s job is SELF-MANAGEMENT–NOT compliance or adherence (I like accommodation better). Since there is no cure for a chronic disease, the goal of care is to have as many good days as possible and as few bad days.

If we want to change health behavior, we must prepare folks for an active self-management role. In CKD, Kidney School is a good place to start:

Folks who choose HOME treatment options get at least some of the education they need to do a better job of self-management. Ironically, getting more dialysis also reduces the burden of “accommodating” to life changes like strict diet and fluid medications, and the need to take an average of 19 pills per day.

Posted by: Dori Schatell | March 22, 2010 at 09:40 AM
Peter Laird, MD

Dear Karol, the life of a doctor is not one to envy at all with all of the outside agency’s that carve out a doctors day, especially complying with HEDIS measures. Several studies have documented that doctors simply do not have enough time in an ordinary visit to meet all of the regulatory compliance issues already in place and listen to the patients complaints. When a patient goes to a doctors office there are several people in that room already. The time that the patient gets is in competition with government regulators, insurance administrators, and also with the potential of malpractice lawyers as well in every visit. In addition, the electronic medical record has added 2 hours of work per day for my colleagues at Southern Kaiser just to talk to the computor. The time that the doctor spends with a patient is literally only the tip of the iceberg of his time he will spend on even a simple visit.

Once the visit is over, tests are ordered, consultations are written and documentation to comply with HEDIS measures as well as for billing begins. Doctors in addition get dozens of patient messages each day, calls from pharmacies, hospitals, ERs, other doctors and maybe a phone call from their wife or children thrown in on top of that. On top of all of this, doctors are expected to keep up with all of the latest developments in the medical literature.

The days when a doctor was alone in the exam room with his patient are long over. However, most patients don’t ever see the rest of the people and agencies in the exam room with them, but the doctor is always acutely aware of their presence. It is no wonder that many doctors quit practice and go into a second career often at a huge drop in income. Once again, the life of a modern day American doctor is not one to envy in the least. The few minutes that a patient sees a doctor could bring literally hours of work just for that one patient. The patient almost never sees the rest of the office visit that goes on and on and on long after the patient leaves.

Is the time too short for the patient? Absolutely, but it is not often the doctors fault, over the years too many people have barged into the exam room with the doctor and patient. It is only going to get more crowed in the exam room, not less.

Posted by: Peter Laird, MD | March 22, 2010 at 10:09 AM
Richie Perl

Sometimes, it’s like trying to get a child to eat their vegetables. There is no perceived immediate benefit of complying. Improvement usually comes over time.
Sometimes, lacl of compliance is due to a deep distrust of doctors (read “authority figures.”)

Some people are “persuaded” by the eventual benefits (the “towards” strategy.) Others are motivated by what would happen with non-compliance (the “away from” strategy.)

Often it is helpful not merely to “dictate” the prescribed protocol, but to have the patient “recite” it back to the doctor, as many times as necessary, until the doctor and the patient feel reasonably sure that the patient has “internalized” the protocol.

THe doctor can also “demand” compliance by sayi8ng, “You will comply with this, right?”
“I don’t get the feeling that there is enough commitment. You will comply…riightt?”
"Once more…with feeling…riightt?

Posted by: Richie Perl | March 22, 2010 at 02:10 PM
Dori Schatell

Richie, your view is looking at the medical staff as the only experts, and the patient as an ignorant vessel to be filled up with the experts’ wisdom. Life isn’t like that. People come to chronic disease with life experiences and strengths. They are not “blank slates,” they need to be FULL PARTNERS in the care process.

So, it’s not about a parent getting a child to eat vegetables or about repeating MD instructions until they are memorized. It’s about understanding what you need to do and why it would benefit you to do it, and making an informed choice of whether to do it or not.

Chronic disease. Not acute illness.

Posted by: Dori Schatell | March 22, 2010 at 02:55 PM