Pls. read (esp post #4) + contribute

[Jane]

Arose early (6ish) fully energized to start the day (thanks to my nocturnal tx). The time thingy on here is way off since I wrote my previous post at about 9 p.m. yesterday and am now writing at about 7ish a.m. Read your post over a 2nd time and was just as thrilled as the first reading. What a well thought out and comprehensive system you have there! To say the least, it is stunning!! One day soon I will be writing about our system which is like loose spaghettie noodles in comparison. Ours varies from unit to unit in that some have more professionalism than others depending on the specific management and staff. But never have I heard anything as well thought out, detailed, focused, educational and supportive as your system. Our renal professionals reading about what you do over there should be humbled to say the least.

I have a number of questions which I will have to get to another day since I am having a time limited day again today. But there was one thing that caught my eye that I’d like to quickly comment on re self-training where you said:

“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.”

Although I am super big on personal responsibility and self-discipline, this is something I do not view in the same way as you. I feel that there are some who can handle their tx unassisted and others who may be just as enthusiastic about treating at home, who nevertheless need support. I do not see this as an issue of being less responsible. Some are simply more affected by kidney disease/dialysis/other health issues then others and may need some assistance to one degree or another. Also, having been in in-center dialysis prior to going home, I have seen every conceivable type of thing occur, situations that no one pictures in a million years could go wrong, but do. Let’s just say stuff happens. So, I am definitely in favor of training caregivers along with patients. Two heads/hands are better/necessary than one in some situations. I do not view this as a sign of irresponsibility or weakness on the part of patients. In some incidences, though rare, it could mean the difference between life and death. Yet at the same time, patients should never take advantage of caregivers’ time or ability to provide support for them. I view it as a team effort with the patient doing as much as he can and the caregiver filling in where necessary. Certainly there are situations where a spouse or other just can not handle being a caregiver and should never be forced into this role. In an event like that, the patient has the option to find another support person. Perhaps there is someone else in the family, a friend , or someone who can be hired if finances are not a problem although it often is for most patients. I am concerned for the patient who has no one to fill this role, because this is someone who should not be held back and relegated to unit care. But there should be less sighs of relief by spouses and others who have no hindrances to serve as caregivers as this is one of the greatest acts of selflessness one can offer. And to condition possible caregivers to not see it as their role and /or priviledge is to deny them the gift of giving which has immeasurable rewards. The relationship between patients and their caregivers is a very unique one with many inherent opportunities for personal growth and blessings of many sorts.

[John_Agar]

Jane … of course some/many of our carers do get involved - where a carer is available. Some/many certainly help - and some help a lot. Some actively seek some or even quite significant levels of training and expertise to help their partner, friend or child …

The points I tried to make about carer responsibility (or, better - in my view - the lack of it) were intended to convey the message - and I regret if this did not come out right - that we, here, believe that …

1. Home dialysis is the primary repsonsibility of the patient, not a carer.

2. Carers are neither essential nor required for safe, effective and wholly satisfying, cost effective, life-style enhancing home care.

3. Lone (unaccompanied) dialysis is not barred nor discouraged here … indeed, many unpartnered Australian home dialysis patients dialyse alone without ‘another’ nearby or ‘there’ for them.

4. Any ‘significant other’ in the patients relationship sphere may, if they wish, take an assiting role … it is clearly their perogative, their right and often their wish and pleasure so to do. But … this is not a necessary requirement. Nor do we encourage or train a ‘home dialysis partner’ to be the do-er - and by thte do-er, I mean the setter-up-er, the needler, the cleaner-up-er, the ‘do-er’! In our view, this should be and is the role of the patient. A partner can involve - or not involve - as they wish and see fit … but it is the patient we train. We don’t not train the partner - though the partner may - if it is their wish and preference - sit in on and be party to the training process, either in part or in full. Of course they can … but there is no expectation for them to so do.

5. This is clearly not the case for children on home dialysis - though it is likely that most children at home on dialysis will be maintained at home on peritoneal dlalysis. Clearly, with children, the parent must take dialysis responsibility … though this responsibility can be graded (or phased) against the age of the child/adolescent/late teen and his/her ability and interest in assuming a greater role in their own self-dialysis.

As an example, here, we once quite successfully trained an 8 year old to safely do CAPD bag changes at home and at school in the teachers common-room … with supervision, yes, from the staff … but, the boy self-managed his bag changes all the same. This continued for 10 months with one brief, easily out-patient treated episode of peritonitis before ultimate and successful transplantation.

Clearly, this will vary, situation to situation, child to child, each individual case being weighed and considered on its merits .

My point was not to suggest - and I apologise if in my efforts emphasise (as we strongly believe it should be) that self-dialysis at home is (1) our gold-standard and that (2) any help should be voluntarily given, should be given but not expected, and should merely complement but not consume the responsibility that the dialysis patient should, in our view, take for his or her own care.

My apologies again if I did not make this as clear as I should have.

John Agar
http://www.nocturnaldialysis.org

[Jane]

Back to this thread and have a number of questions:

1 ) What type of catch-up education is done for those who present late?

2 ) How does the physician determine if the elderly patient with eGFR 25 is a good prospect for dialysis or not and what is considered elderly?

3 a.) What % of HD patients dialyze solo?

3 b.) Has there ever been an incident that a patient dialyzing solo couldn’t get out of?

3 c.) What are the most serious problems a solo dialyzer could get into if not well trained?

3 d.) How many weeks/ hrs. per day is the training for home HD?

3 e.) Do patients have to skip txs if there is a maintenance problem until a tech can get the needed part or schedule the repair?

3 f.) What is the age range of those who dialyze solo?

3 g.) What would be the reason for those who do not use the buttonhole technique?

3 h.) How often do home HD patients see their nephrologist?

3 i.) Are home patients tested quarterly with Transonic as in-center patients are?

4 ) Why is 70% of the HD population incapable of home care?

5 a. ) Re access, the non-handed arm is marked, but since the handed arm is a possible future location for an access shouldn’t that arm be preserved as well? Here, good practice is to use a vein in the hand of the handed arm for IV’s or blood draws although it often is a problem when nurses are not skilled enough to get in using the hand.

5 b.) How long on average is the life expectancy of fistulas?

[John_Agar]

1 ) What type of catch-up education is done for those who present late?

This is always difficult but, depending on ‘how late’ … we integrate into the program where possible or try for a ‘one-on-one’ with the dialysis educator … as best as possible. Some ‘never want to know’.

2 ) How does the physician determine if the elderly patient with eGFR 25 is a good prospect for dialysis or not and what is considered elderly?

Experience, understanding of the patient, their needs, their expectations, the needs and expectations of their family … so many things … we are all human, but, with two-way common sense and empathy, we usually seem to get it right.

And, as for ‘elderly’? … it isn’t always ‘elderly’ - just it is more commonly so.

Age is not just chronological but physiological … so I (we) take and assess and consider each patient, at his or her merit, Jane.

Perhaps I used the word ‘elderly’ when a better phrase may have been ‘one who prefers to accept life’s inevitabilities’ … though that doesnt ‘do it’ either … so, please, I would again ask you to try not to take every word I use quite so literally as you place your interpretations on what I try to say …

Conceptually, some patients may (and do) ‘choose’ or ‘prefer’ a ‘natural solution’ at the ends of their lives. You mightn’t, I mightn’t (though I am not so sure that will be true of me when the time comes as I tend to fatalism!) … they may ‘resist’ or ‘not wish’ intervention … and such patients are entitled to that choice, to that view, if they hold it truly. Patients do not all want dialysis. Not all patients see dialysis support as a natural, desirable ‘end-game’ to their lives … as it is and will be, sooner or later, for those who cannot be transplanted. Age is but one, though common, aspect of the mix. Dialysis for older (and again, I use ‘older’ here because it is more common for this to be the view of older patients) is no bed of roses. They should not … and here, are not, coerced to dialysis. It is told as it is … difficult and fraught with problems (especially in our older patients) … though there are clear benefits and hopes provided by entry to a dialysis program too. Simply, we show the bad with the good … and many patients (and I mean many) elect conservative care.

And, good on them for making that decision - if it suits them and is made in full knowledge. Australia, the UK and Europe are far more comfortable with conservative care, it seems, than is the US. I don’t presume to know why. It is just an observation, backed by some emerging and sound data.

And … ‘conservative care’ … that is not withdrawal of care! Not at all. It is all care, all compassion, all help, all assistance, all community supports, all medicines, all ESAs, everything … barring dialysis. And, the data (and good strong data too) - especially from the UK - tells us that patient survival and QoL is just as good with conservative care in the over-80’s with one or more co-morbidities as it is with dialysis.

So, I apologise if I made it sound as if age were the factor. Clearly that is not so … it is just a common one.

3 a.) What % of HD patients dialyze solo?

At the moment, some 9 of our 34 NHHD patients do so. And … Australia-wide? - actually, I have no idea. A goodly number, I suspect.

And … even those with ‘partners’ or ‘helpers’ or ‘carers’ have the partner/helper/carer slipping off to the supermarket, the bank, the shopping’ or a ‘respite night or two with the kids’ … or just ‘out and away’ for part or all of the dialysis.

We train the patient, not a carer.

3 b.) Has there ever been an incident that a patient dialyzing solo couldn’t get out of?

Ever? Anywhere? Anytime?

I seriously do not know. None that I know of? … at least not with our patients.

But remember, situations happen (daily) in our facilities that nurses, doctors … there, on the spot and surrounded by all the equipment in the world … can’t 'get out of’.

So, let’s retain perspective in this. Dangers, unexpected things, lurk and abound for us all in this luckily, happily, unpredictable world we live in … that’s part of its’ joy. If we could cocoon all in a wall of safety, I think it’d be a rather sad place to live in, actually. We take responsibilities, we stand up for our own actions (or should – or should more often) … so, no, I have no qualms about a well trained patient self-managing dialysis. Yes, things may go wrong. They know that. I know that. We can but take what sensible actions we can to ensure safety.

3 c.) What are the most serious problems a solo dialyzer could get into if not well trained?

To answer this means to repeat our whole training program … here, at this website. I do not plan to do that. Jane, we are responsible people … at least I think and believe we are. We train well. We do not send home until and/or unless we believe the patient can handle bleeds, blown needles, power failures, water failures, darkness … and a range of acute ‘whoopsies’ … that is what the training programs are all about!

Our nurses handle these issues – well, most or all of them – well or poorly, easily or under stress, each day in our facilities. What is so different about a well trained patient doing so? Some might thing (as a patient) that being ‘one-on-one with myself’ at home, especially if I (as a patient) have trust and confidence in myself, is the greatest safety feature of all. I think (maybe misguidedly, I suppose) that this is true of well trained patients … better the devil I know (me) than one I don’t (one of many potential ‘carer’ nurses in any one facility).

3 d.) How many weeks/ hrs. per day is the training for home HD?

As long as it takes.

The mean? … about 4 weeks of 4 x week (M/T/T/F) training on dialysis, with each treatment session being between 4.5 and 5.0 hrs in duration … and that ain’t just sitting there like facility care … that’s work, demo’s, tutorials, DVD/CD and manual work, slide shows … whatever works best for that patient.

And … each patient trains differently. Some need and work best with a written manual, some with pictorials, some with white-board sessions - each must be trained individually and using individual ‘that-patent-specific’ techniques.

So, a good, effective training unit will have (and be able to adapt) all these techniques as appropriate to each specific trainee.

The maximum? … how long is a piece of string? Some might take up to 4 months.

We train till we are happy the patient is self-capable. And … sometimes after even months, they may still not be.

If so, we may take a mutual decision that ‘home’ isn’t going to be for them … and if so, so be it.

At least they (and we) tried and gave it their best shake. That is all we ask and expect.

3 e.) Do patients have to skip txs if there is a maintenance problem until a tech can get the needed part or schedule the repair?

No, each renal unit has its own technicians. There aren’t company technicians here. Our technicians are are my own units’ technicians. And the next renal unit up the road has their own techs too. They work just for us, for our patients - not for anyone elses’ service - just for our own. It is our own services’ responsibility to repair, replace or fix any problems with our equipment. We have our own back-up machines, our own biomedical engineering departments and workshops, our own bank of spares - from a simple ‘O’ ring or seal through to full replacement machines and R/O’s.

We have a 24 hr a day, 7 days a week service. Machines are replaced, if need be, that day … always that day. Well, always? … is that my natural bent for hyperbole or can I really think of a case where that wasn’t possible? Well … yes, maybe one, two … but if such a case eventuated and we were unable to do a same day fix … what’s the problem?

We would bring the patient in to our HTU (oops … our home training unit) and manage them there where we have a respite chair and a spare training chair to use ‘just in case’ and/or until the problem is solved. None of this actually is difficult. It is all logical. It just needs to be thought through. It is not rocket science nor exceptional. Its just part of what we do - or should do.

Further, each machine has its’ idiosyncraccies, its’quirks. A generic company ‘fixer’ from out-of-town will not know each machine as well as our 20+ year on-site tech team does. They know each of our machines like an old friend. It works best for us (and them) … and the patients … and we are sticking to it!

3 f.) What is the age range of those who dialyze solo?

Same as our non-solo’s. The oldest solo in our unit is, I think, now 79 - but he’s been at home (solo) now for 9 years since he was70 … so maybe that’s cheating as he was 70 when he started out. The youngest is 24. The rest of the solos? = no different from the rest of our home dialysis population (+/- 60-ish).

3 g.) What would be the reason for those who do not use the buttonhole technique?

We get a ‘feeling’ … how scientific is that! … that some AVF will be best laddered – though most are on buttons.

Sight, diabetes, skin issues … and sometimes just the ‘look’ or site, or ‘whatever’ of the AVF … … a feeling in the water? … nothing concrete, no rules … just experience and understanding of what we do.

OK, that’s not a good answer but, Jane, not everything we do is rule, regulation or evidence-based (though wouldn’t it be nice if it was), nor is it ‘scripted’.

Sometimes, we just ‘feel’, ‘think’, ‘suppose’ … and I think that’s kind of good and healthy. Why don’t you ask Stuart Mott this one? He’s the AVF expert here.

3 h.) How often do home HD patients see their nephrologist?

Each 2-3 months … for most, 2 monthly … along with 2nd monthly pre- and post- bloods, self-taken and self-centrifuged at home.

3 i.) Are home patients tested quarterly with Transonic as in-center patients are?

We would like to think they were – but no, often not.

This is mainly because it is sometimes hard to integrate a time for a home patient coming in with the availability of the Transonic. We try to interfere as little as possible with their ‘normal’ lives … we keep regualr phone contact at least weekly with all patients at home and are ‘there’ for them if they need us but sometimes patient-meets-Transonic isnt so simple! It may be at another satellite facility and unavailable. We watch or keep track of AVF pressures and flows, bleeding issues, needling problems, symptoms etc … and most commonly the patient will tell us when ‘things aren’t quite right’ … and then we look.

3 monthly Transonics for the homies? … well, we should, yes, but logistics often trump rigid rules in our home program … and this is a case in point.

4 ) Why is 70% of the HD population incapable of home care?

I would have thought that was relatively obvious.

I won’t go further here - it only takes for one to look about at a facility … many of those folks 'just can’t’.

5 a. ) Re access, the non-handed arm is marked, but since the handed arm is a possible future location for an access shouldn’t that arm be preserved as well? Here, good practice is to use a vein in the hand of the handed arm for IV’s or blood draws although it often is a problem when nurses are not skilled enough to get in using the hand.

You can’t preserve every vein, Jane!

People need IV’s from time to time, bloods need to be taken, blood pressures need to be measured.

Common sense should prevail. It is impractical to ‘preserve’ all veins at all potential futuure (maybe) sites, ‘just in case’.

So, no. Again … we just do our best!

None of us work magic … we are just (other) people trying to do the best we can with what we have and under the circumstances we are dealt – just like our patients are.

5 b.) How long on average is the life expectancy of fistulas?

Again … how long is a piece of string? … and again, maybe another for Stuart Mott.

For example, we have several patients with the same AVF that has been used pretty much continually since the early 70s.

Most? … we’d hope for a couple of decades at least.

Many? … will go down within a year and need reconstruction or revision or renewal.

There is no data on an average life expectancy for an AVF … well, none that I am aware of.

It depends on stuff like the patient, on the veins, on the quality of the AVF, the surgeon, the needling techniques, the heart, the circulation, the drugs the patient might be taking … everything!

I cannot hope to answer that question.

John Agar
http://www.nocturnaldialysis.org

[Jane]

How many total home HD patients do you have? What % do short txs vs nocturnal txs? When I started nocturnal over a yr ago, I thought there might be times when I would do short txs, but have not done a single short tx at all. I prefer nocturnal so much more that short txs are history. The only way I would do a short tx is if my heparin pump had to go in for a repair which it has not thus far. It is beyond me why the U.S. pushes short txs making nocturnal txs seem unsafe. The truth is it is the other way around. I am glad my neph is one of the visionaries who wrote for me off-label. It is truly a travesty of justice that nocturnal txs were always possible, but not utilized more widely until the current day.

It is nice to hear how extensive the training is in your program. My training was like a person who does not know how to swim being tossed into the middle of a pond and being told to sink or swim! It only lasted a mere 2 weeks with my training nurse running back and forth between me and other situations she was dealing with. The boards are active with patients who are only half trained trying to fill in the blanks.

[John_Agar]

Our NHD numbers

I seem to recall that I have actually stated all this data at this site before … indeed, only a few posts back.

It is also listed (and only relatively recently updated) at my website http://www.nocturnaldialysis.org … but, I will state our program again for you - as it is at the moment.

The numbers clearly will vary up and down according to transplantation, transfer or demise for all patient groups.

In Geelong, we currently have 34 patients at home on nocturnal haemodialysis (NHD).

These NHD patients commonly do 5-6 nights/week with 8-9 hr treatment duration for each dialysis. A few do regimen mixes (as it suits their lifestyle) as lifestyle is a major reason - not the only one, clearly, but a major reason - why we encourage home therapies. These mixer regimens might look something like 4 nights one week, 5 nights the next. A few of our patients prefer to do alternate night dialysis, but, as stated at my website, most of our patients do more frequent and long hour dialysis combined.

In Australia, most other nocturnal services more commonly run alternate night or 4 x nights per week treatment regimens for most of their patients. So … Geelong, in this regard, is an 'old fellow out’ unit. I still embrace and prefer to recommend the full ‘more is best’ concept first popularised by Pierratos and Uldall … the model of 5-6 nights/week … just as Bob Lockridge also still prefers for his patients in Lynchburg, West Virginia.

We have 110 total HD patients

That means 110-34 = 76 facility-based patients.

Of these ~15-20 are high dependency out-patients at our on-campus-site, our hospital-based facility, but as out-patients – sharing this facility with its proximity to medical care with any in-patient dialysis dependent patients (acute or chronic) who may at that time be in hospital for whatever reason.

That leaves a remainder of ~60 patients … though this number, as do all dialysis service numbers, waxes and wanes from time to time. These patients are scattered among our two suburban satellites. We operate one large (max. 18 chair) and one small (max. 6 chair) units in the suburbs of Geelong while we also serve our distant facility-based patients with regional services based in smaller regional centres or country towns where they are attached to regional or rural hospitals or health services.

As so many of our patients are like a bit like ‘ET’ and like to ‘go home’ in our home programs, we have not needed to add a facility chair in more than a decade … indeed, our facilities are much less busy and utilized that they were back in 2000-2001. We have spare chairs. We have even closed some.

Why? How? … well, by adding our home HD and home PD (see below) programs together, of our 135 (or so) patients, between 35-40% are at home.

We sustain an additional 20-25 (current 23) on PD … all in the home … with a majority on APD and a minority on CAPD

Information not given previously includes an additional renal replacement patient group: ~120 transplant patients with our transplant rate at +/-10 yearly, the majority recently being live donor transplants.

Are we doing the best of the Australian units in home dialysis (HD + PD)?

NO! we are not. There is one unit – one of Australia’s largest – Westmead in Sydney – which has a far greater (66%) of their patients at home. There are several with >50% of their patients at home … though most of these attain their high home rates through home peritoneal dialysis rather than as we do, through home haemodialysis.

So, we are not doing as well (if home dialysis is the yardstick of ‘well’) as some of our brother and sister Australian (and New Zealand) units. In New Zealand’s South Island, home dialysis (of either modality) is all that is offered … yet their dialysis uptake rates are just as ours. They are the kings at home support.

You might think we do well at getting our patients home … but, just look at Christchurch and Dunedin! Chris Blagg and Carl Kjellstrand have often held Christchurch up as the ideal model … and rightly so.

However, we DO have the highest proportion (by some distance) of home HD patients as a percentage of our whole and of our haemodialysis population … the highest percentage of home HD relative to all HD (if I am not mistaken) of anywhere in the world.

Other units with higher home penetrance achieve that penetration through PD. We reach our home target through HD.

It should then become clear that we have let our PD program wither … and we are embarasingly aware of that … and are now taking steps to grow and increase our PD again … though we will not be doing this at the expense of our nocturnal haemodialysis penetrance but as a complementand addition to our home HD numbers.

We should be past 50% home … and will be very shortly.

As for the hours of dialysis:

As I have outlined previously here and at my website, Australian (and our) facility-based patients almost all offer a standard three treatments per week, given on a M/W/F am or a M/W/F pm shift or on a T/T/S am or a T/T/S pm shift. Almost all Australian units run two conventional dialysis shifts each day, 6 days a week – though some smaller regional and rural units run but one shift a week – commonly a M/W/F am shift.

While each patient has an individually prescribed dialysis treatment duration, the average (mean) dialysis treatment duration is ~ 4 hr 20 min = 260 minutes.

While occasional conventional facility-based patients still are given <4 hrs dialysis treatment time (as low as 3hr 45 min = 225 min), usually because they have sufficient residual function to allow a shorter time, almost all (>95% of national patients) range upwards from between 4 hr (240 min) and up to 5 hr (300 min) per treatment.

We are relatively unusual for an Australian unit, here in Geelong, as we sustain a few patients … currently 6 but it has been as high as 12 … in our facilities on what I would call ‘short daily’ dialysis. Australia has almost no short daily (in the US-meant sense of that description) … although some here might say 4-5 hr treatments are still short(er) hour dialysis. Again, I have discussed this issue several times before, both at this site and at my website.

We use, for these few, a short daily regimen of 2.5 hrs x 6 times weekly. The patients we sustain in this way are a tiny minority and we chose them for or recommend this option usually because they have ‘narrow volume windows’ – this, in turn, usually being as a result of poor underlying cardiac function and a limited cardiac reserve.

Previous webinars, my website and previous discussions at this Q&A site all have addressed this issue.

John Agar
http://www.nocturnaldialysis.org

[Sineadee]

hi Dr Agar and all
apologies for disappearing for a while. Life on dialysis can be all consuming at times (thinking, reading, and writing about it),but thankfully there is a lot of ‘life’ separate from dialysis. Some of it is fun, and challenging, and fulfilling and some of it is very sad. My Dad passed away after a long and courageous battle with gastro-oesophageal cancer on 22nd of April. Trying to visit him down the country proved more difficult, without transportable dialysis, but I saw him twice a week for his last few months thankfully. I miss those visits. Anyway this forum is not for talking about my Dad. I am kind of getting back on track and will start to partake again.
Bye for now,
Sinead.

[QUOTE=John Agar;19604]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
http://www.nocturnaldialysis.org[/QUOTE]

[Jane]

Dear Sineadee,
I am very sorry to hear of your loss. You described the life of a pro-active dialysis patient well. Every little improvement makes life better for us in ways that a non-dialysis person does not have to contend with. So, God Bless those who make a difference in our lives. My prayers are there for you in this life transition and may more improvements come your way soon.

love,
jane

[Sineadee]

Thanks Jane for your lovely message.
Hope you’re having a good day.
Bye for now
Sinead

[Jane]

Dr. Agar,
I am just now getting back to your last post in this thread. I really was only looking for a one sentence answer. I had forgotten the part about how many nocturnal patients you had vs short daily/days /hrs of treatment and wanted to get that straight. It goes to show that it is just as possible to promote nocturnal as it is to promote short daily. It is the other way around over here with the majority in home txs on short daily. While it’s a good improvement over 3x incenter, I have never been so happy as to of finally been approved for nocturnal 14 months ago. I wish the whole dialysis population could know how much better nocturnal txs are. I marvel every day at how much better I am living. The additional info you shared was really fascinating.to actually see the breakdown over there. I had never heard of Christchurch and Dunedin with Christchurch being the ideal model. I’d like to find more info on that.

[John_Agar]

Dear Jane

Christchurch and Tassin have been the beacons to us all - since the 1970’s.

Both of these imaginative and unique programs well and truly preceeded those of Pierratos, Lockridge, Lindsay and Agar (and even these only among many others).

Much (no, most) innovation in dialysis program modality design, home implementation and flexible regimens have NOT occurred within the US where dialysis remains poorly funded, poorly structured and broadly inadequate but outside the US … perhaps others (like Dori) may help back up that rather sweeping statement - but I believe it to be true.

US dialysis is, in my humble opinion, far behind the rest of the world, whether that be ANZ, Canada, most European countries, Japan, Turkey … you name it … largely due to your impossibly mired, inequitous and cumbersome funding mechanisms and to your lack of any semblance of universal health care and coverage for all - things we take as routine services. In my view, the healthcare reforms the US has made are not true reforms at all … but that is another story and I wont delve further. Suffice to say that it is a pity the US looks only at itself and not outside - as some good things do happen ‘off-shore’ … and Christchurch has been one of them.

Perhaps Dori might prevail on Chris Blagg or Carl Kjellstrand to write a piece re their views on this topic for these pages.

John Agar
http:www.nocturnaldialysis.org

[Dori_Schatell]

I could not agree more with anything you said! And I’ll see if I can’t prevail on Dr. Blagg or Dr. Kjellstrand to respond as well.

[John_Agar]

Jane

One more thing to add …

You see - I find it hard to understand it when you write that "I have never been so happy as to finally be approved for nocturnal after 14 months … "

Approved?

What does that mean? Why ‘approved’? Why do you have to be, should you have to be, be ‘approved for’?

We train 3 at a time for home NHD. Princess Alexandra in Brisbane trains 6 at a time for home NHD. There is no ‘approval’ waiting time. There is no need to seek approval.

If home is what we think to be the best option … and the patient agrees … we train from the get-go … from CKD straight into NHD … from failing transplant or failing home PD straight into home NHD.

There is no ‘approval process’, ‘no approval application’ and no approval wait. It is a clinical decision - as it should be - a decision taken between doctor and patient … here, in Canada, in New Zealand, in Hong Kong, in Europe (Denmark, the Netherlands, Finland, Turkey, France, Italy, Germany and now, beginning, in the UK … etc).

Approval? Why a 14 month wait? That beats me.

Want NHD? - get NHD … as soon as a training spot is cleared.

Why should dialysis at home (better, cheaper) need approval or be any different?

I don’t quite understand … perhaps someone Stateside might explain to me in very simple words that I can understand why it is that anyone needs ‘approval’ for any modality of dialysis.

Do you need approval for facility care as well? Say ‘no’!

If ‘no’, then why might approval for home be needed?

And, you are not the only US dialyzor who I have seen has writing like that … so, I am not trying to pick on you (well, I don’t mean to be) but understand a system that could possible allow or require ‘approval’ for a medical treatment like dialysis.

It would have to be the weirdest system, one beyond understanding, that would require some ??? “third party approval” - if that is what is meant by ‘approval’ - for any medical treatment of any ilk … not just dialysis.

It’s actually no-one else’s business, save for the treating doctor or unit and the patient … or at least that is what is the case here and elsewhere …

John Agar
http://www.nocturnaldialysis.org

[Dori_Schatell]

Most U.S. programs train folks for home treatments one-on-one. So, there’s a considerable investment in nursing staff time, and they tend to have “approval criteria” for who they will and won’t ALLOW to do the “privilege” of home dialysis. (One reason we created the Method to Assess Treatment Choices for Home Dialysis – MATCH-D – http://www.homedialysis.org/match-d was to BROADEN the criteria clinics used and help them see outside the box).

Even with all this, the dropout rate for short daily HD can be pretty high–anecdotally, as much as 40%. So, this makes folks feel that training time must have been wasted on poor candidates, so they get even more strict about who is and isn’t a “good” candidate. It’s a bit of a vicious cycle.

We try pointing out to folks that:
– It is more efficient to train in small groups, and creates a built-in support system for both dialyzors and care partners
– ANY dialyzor who is motivated can succeed on home treatments–it isn’t about “good” vs “bad” candidates
– The more folks who are trained, the more will ultimately stay on the therapy
– Training NEEDS to include the impact of home treatment on the partner, AND expectations that the patient will do ALL or at least the VAST MAJORITY of the tasks involved in home treatment. (Anecdotally, again, we hear that dropout may be more related to care partner burnout than dialyzor choice).

IMHO, we don’t even have a “system of care” in the U.S. We have a chaotic mess of multiple pieces that don’t speak to each other. Care is not coordinated. Education is virtually non-existent. Each year in the U.S. more than 110,000 people start dialysis, and each time one does, it’s as if it’s never happened before. We do a wretched job with chronic disease, and try to treat everything as if it is an acute issue. And healthcare “reform” won’t change any of that.

[John_Agar]

As you know, Dori, I think that I do (broadly) understand the US ‘system’ - or better, its’ lack of one. However, it never ceases to shock me when I hear or read how a patient ‘waited for approval’ or ‘waited for acceptance’ onto a home program … sometimes for months (as in Jane’s case) … when it should really be automatic.

You will also know that I think there may be a different ethos in the expectation ‘of’ and ‘from’ their healthcare between US citizens and those of some other countries. It seems - and I may be misinterpreting the signals I get on this - that there is more of an expectation that care will be ‘done for me’ or ‘given to me’ in the US … that it is my ‘right’ … where here, for example, there is more of a ‘if I have to be sick, I want to keep control of what happens to me’ and ‘care for self rather than have self cared for’ attitude.

Perhaps, if this is so and that difference exists, it stems from our (Australian) combative convict roots - who knows - and our much vaunted but part mythological national mindset of disdain for authority … often referred here to as our Australian larrikin streak … [larrikin: a person who pays little attention to what others think about them, who breaks the rules of social convention] … which still is popularly believed to infuse a rascally thread of individualism though the Australian national character.

Who knows.

What is certain is that there are no approval criteria in Australia. It is a compact, between doctor and patient. Home dialysis is ‘done’ here if it is wished by both parties. And, it is routinely discussed as a first option therapy.

It is a pity I cannot manage to include a table here from the Kidney Health Australia survey I am presenting on behalf of KHA next week in Seoul at the 12th Asian Pacific Congress of Nephrology … I don’t know technically how to do that, Dori (I have tried copy and paste of PPT and excerpt tables without success) … to show the home dialysis milieu in which we live here. It may have shown some of the reasons why home dialysis ‘works’ here. It is a survey by KHA (our iteration of your NKF) which shows the % of Australian renal units and Australian nephrologists who have home training facilities or who have direct access to a home training facility. I understand (anecdotaly) that the data is starkly different in the US.

I was, of course being purposefully provocative in my last response to Jane … I was in a provocative mood! … so I hope Jane will forgive me if i was too ‘in shock’ and over-the-top for her.

But the truth is that there are huge differences between ‘US’ and ‘other’ dialysis programs, differences that are not commonly appreciated Stateside, and these differences do not always positively reflect on US practices. That this is unappreciated by so many in the US - at health professional, governmental and client levels, all three - is a little sad.

John Agarhttp://www.nocturnaldialysis.org

[Dori_Schatell]

Hmm. Sounds like I might have Larrikin tendencies.

It’s true that the expectations in US healthcare (since it is based on a medical model that is a poor fit for chronic disease of ANY type) is that the professionals will care for passive patients. We grow up with the notion that when we are sick someone will care for us. And, for professionals, there is an infantilizing of the sick–especially people on standard in-center dialysis (which I call outpatient institutionalization). There are clinics where patients get yelled at–literally as if they are children–if they gain too much weight between treatments, and where they are not “ALLOWED” to put in their own needles, let alone to consider dialyzing at home!

And we wonder why we have some of the worst dialysis outcomes in the civilized world?

[John_Agar]

God that we could be a team! … there is a sense of the ‘formidable’ here!

It is weird to so agree …

John Agar
http://www.nocturnaldialysis.org.au

[Jane]

Dr. Agar,

As for a little clarification here (and don’t worry about stepping on my toes as I have been around the block a few times), I meant that I have been doing nocturnal for 14 months now, and in order to have been able to launch out into the modality of my choice, my neph had to write my tx off label taking me on her medical insurance and she also had to secure legal permission from the corp. that owns our clinic. But it gets worse (I hope you are sitting down)…it was not 14 mo. that I had to wait - I had to wait almost an entire decade ( yes you read right), to simply be given the opportunity to do nocturnal txs.! I was stuck in 3x in-center dialysis with every plea I had to be allowed to do home txs dismissed. Forget about nocturnal txs. I couldn’t even do home txs!

I often feel a movie should be made out of my life. But not just my life- rather every kidney patient in the U.S. who desired improved dialysis and was denied. If a movie were to be made of the dialysis industry in the U.S., it would be rated a horror movie as our system is a nightmare for so many patients!

For years, patients, a sparse number of professionals and concerned others have protested the ludicrousness of our system only to make a snail’s pace of improvement. It has only been in recent years with NxStage coming on the scene that the doors have opened more widely for predominantly short txs at home and a few nocturnal opportunities.

It is beyond my comprehension how the possibility for nocturnal home txs always existed with a few nephs making sure their patients got it, while the whole of nephrologists cow towed to the system. And of course, it was necessary to keep the patient population blind to the fact that there was a far superior tx, so education was held at a distance.

The entire time I have been on dialysis, the challenge has been, if I can think of the questions, I might get some kind of answers. That is why pro-active patients flocked to the net in desperation for education from more experienced patients and the rare, few professionals that came on the net to educate.

It was the hardest thing imaginable for me to do txs on in-center dialysis, day after day, month after month, year after year knowing there was a much better tx ( l learned about it on the net), yet relegated to in-center, institutionalized care which is like a form of imprisonment in this country- arrogant doctors and nurses who treat patients like they better sit down and shut up if they want to get their txs, filthy conditions, care regulations routinely broken right before one’s eyes.

Yes, our system is completely different when it comes to the specialty of dialysis then the way you describe yours and that of other countries. The stronghold against quality care has been relentless. The apathy of the medical professionals has been shocking. The warehousing of patients has prevailed.

The tide has only slightly turned due to the introduction of the NxStage machine which is getting a small, but growing percentage of patients out of the units. But even with this development, training for home txs is still mediocre, overall, and this new crop of home patients is flailing their arms for help in net groups. FDA approval ( yes there’s that word ~approval~) is being awaited for nocturnal txs on NxStage with many wanting to move from short to long txs having realized that short txs, while an improvement, are not the best and are too invasive of patients’ family time and employment schedules.

[Dori_Schatell]

[QUOTE=John Agar;19679]Dear Jane

Christchurch and Tassin have been the beacons to us all - since the 1970’s.

Both of these imaginative and unique programs well and truly preceeded those of Pierratos, Lockridge, Lindsay and Agar (and even these only among many others).

Much (no, most) innovation in dialysis program modality design, home implementation and flexible regimens have NOT occurred within the US where dialysis remains poorly funded, poorly structured and broadly inadequate but outside the US … perhaps others (like Dori) may help back up that rather sweeping statement - but I believe it to be true.

US dialysis is, in my humble opinion, far behind the rest of the world, whether that be ANZ, Canada, most European countries, Japan, Turkey … you name it … largely due to your impossibly mired, inequitous and cumbersome funding mechanisms and to your lack of any semblance of universal health care and coverage for all - things we take as routine services. In my view, the healthcare reforms the US has made are not true reforms at all … but that is another story and I wont delve further. Suffice to say that it is a pity the US looks only at itself and not outside - as some good things do happen ‘off-shore’ … and Christchurch has been one of them.

Perhaps Dori might prevail on Chris Blagg or Carl Kjellstrand to write a piece re their views on this topic for these pages.

John Agar
http:www.nocturnaldialysis.org[/QUOTE]

Hi all,

Dr. Chris Blagg and Dr. Carl Kjellstrand were kind enough to formulate a reply, which I will post below:

"Unfortunately John is too young to know about dialysis in the 1960s in the United States and particularly in Seattle. While the programs in Christchurch and Tassin are the ones everyone knows about, they are neither first nor unique. The Tassin program of three times a week long hemodialysis was started by Giles Laurent after visiting Seattle in the mid- 1960s where this was already routine. The Christchurch home hemodialysis began in 1969 after Dr. Peter Little visited Seattle where home hemodialysis had begun 5 years earlier and 90% of the hundred or so patients were dialyzing at home three times a week ( more in a few cases), generally overnight for 6 to 8 hours, and mostly rehabilitated.

Having said that, we have to agree with John that dialysis in the United States generally is not very good in terms of patient survival, quality of life or rehabilitation in comparison with many other countries. While the inclusion of dialysis and transplantation into Medicare in 1973 was a great quantitative success, dialysis in the USA has become a qualitative disaster. The Medicare End-Stage Renal Disease Program gave universal entitlement to patients requiring dialysis and transplantation, and dialysis units multiplied rapidly to provide access to the many new patients including diabetics and the elderly. Unfortunately, initially reimbursement for in-center dialysis was extremely generous and for home dialysis was extremely poor and so over the first ten years center dialysis grew rapidly and home hemodialysis declined steadily. For-profit dialysis burgeoned and its protagonists had no interest in home dialysis and actively opposed it as being dangerous. It is worth remembering Scribner’s words to a congressional committee in about 1980 – “What started out in 1960 as a noble experiment gradually has degenerated into a highly controversial billion dollar program riddled with cost overruns and enormous profiteering.” A lot has changed since then, much of it not for the better.

In 2007 in the United States, so called “adequate dialysis” resulted in an expected remaining lifetime in all dialysis patients in their 30s, 40s and 50s that is only about one-fifth as long as that of their counterparts in the general population and a death rate significantly higher than breast, prostate or colon cancer. The major culprit has been the misleading belief that urea removal is important and that Kt/V, introduced in the early 80s, is a good measure of adequacy of dialysis, based on data from a study of a very small number of patients. The belief that K and t were completely interchangeable led to shortening of dialysis time that was wholeheartedly embraced by many staff, patients and dialysis programs, particularly the for-profit dialysis programs. Decreasing time – the most costly component of dialysis, - while increasing K to have “adequacy” greatly increased profitability of dialysis - an unholy alliance of poor science and eager business.

The middle molecule hypothesis, introduced by Seattle at about the same time as Kt/V, emphasized the importance of long dialysis time but was generally was ignored until recently. Now the importance of toxins that require long dialysis for removal as they move very slowly from compartments in the body has begun to be recognized again. Secondly, the lesson of Claude Bernard of 150 years ago, that maintaining homeostasis - stability of the body fluids - has been ignored. The violent convulsions in body chemistry caused by short hemodialysis three times a week are an important cause of disability and death. Twice as many patients die after the long three-day weekend wait for dialysis as on the other weekdays. Three days without dialysis is too long – fluid overload and short dialysis cause symptoms both during and after treatment and with potassium intoxication can be lethal.

More frequent hemodialysis, short during the day, or better, long during the night, is the solution. Studies from several countries over the years have shown better patient survival with three times a week hemodialysis at home compared with in center, and recently patient survival has been shown to be two or three times better with more frequent daily or nightly hemodialysis when compared to thrice weekly center hemodialysis. In fact, survival rivals that with a deceased donor transplant.

To us the lessons are clear: if you want to survive many years on hemodialysis, do it at home, use longer hours and do it almost every day or night. Long and more frequent dialysis can only be done at home.

As for the recent health care reform legislation – while far from perfect, the United States has to start somewhere. One has to hope that Sir Winston Churchill was correct when he said “You can always count on Americans to do the right thing - after they’ve tried everything else.” We haven’t got there yet with dialysis, even after 27 years of the Medicare ESRD program."

[John_Agar]

Drs Blagg/Kjellstrand … my thanks!

Thank you, both Chris and Carl, for this response. I was indeed remiss, in my last post here, to fail to reference the seminal work of Seattle - truly the home of home dialysis.

Thank you for correcting me … though I am both aware of and will be ever grateful for the lead Seattle gave to all who believe in home dialysis.

Thank you also to Dori for seeking their response and posting it here. I hope as many as possible will read what they have said and, through it, understand that although, clearly and unequivocally, the US once led the way for all of us, it also then lost its way. While there are now encouraging signs of enlightenment, the message has still to filter through to the dialysis-for-profit 'marketplace.

I think that the point where it all ‘went wrong’ in the US was when, as Drs Blagg and Kjellstrand pointed out, the concept that one could make a profit from dialysis began to cloud and diminish medical judgement. Sadly, this was at the expense of good dialysis. Many (dare i say most) other countries did not take this ‘for-profit’ approach and ther dialysis programs and patients have benefited as a result.

In the US, where profit dominated over good clinical decision-making and concepts like the highly flawed ‘Kt/V’ steered dialysis on an incorrect course, the outcomes have spoken for themselves … as was pointed out in the outcome measures Chris Blagg and Carl Kjellstrand described in their post.

John Agar
http://www.nocturnaldialysis.org