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
http://www.nocturnaldialysis.org
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.