Preparing the family

Dr Agar, I understand your thoughts about training the patient for home dialysis, not the “carer”, and agree with them entirely. But I would be very interested to know how you/your clinic staff prepare a patient’s family for bringing dialysis home. Even though the patient will be responsible for all of the dialysis “stuff”, no family can possibly not feel some of the effects of having a family member dialyzing at home. How is a spouse prepared for his wife/her husband bringing nocturnal dialysis into the bedroom, for instance?


It is our practice to educate, as best we can, prior to entry into renal replacement.

When a patient is identified as ‘pre-dialysis’ … eGFR <25 … we begin the process of ‘education-by-drip-feed’. The patients … and their spouse, partner, children, friends - whomever they feel they wish to share their experience with … have a series of one-on-one’s with our education nurse, a nurse trained in explaining and presenting all modalities and options: PD (CAPD and APD), HD (home, satellite and in-centre HD) and transplantation (living related, living unrelated and deceased donor). This is in addition to and does not replace but serves to reinforce the concurrent education undertaken by our nephrology staff .

In addition, we run extensive pre-dialysis group-session education days (~4th monthly), to which we encourage all pending (and recently started) patients to come and to bring their ‘significant others’ … spouse, partner, children, friends … whomever they feel they’d like to share their impending renal replacement journey with. We run separate dialysis and transplant education programs, as the information given those on the transplant list is very different from the dialysis education program – though clearly many patients will be invited to attend both education streams.

Not all patients care or choose to come. If they do not attend, they will receive a further invitation after more one-on-one discussion around their reasons for not attending … but at the end of the day, some patients still refuse to avail themselves or their families/friends of the offers. We simply do our best. We cannot force.

At the group sessions, our various staff departments, nephrology, PD nurse trainers, home HD nurse trainers, facility HD staff, dietetics, social work, and our ‘Respecting Patient Choices’ program staff … all play their part, but the most popular and most effective parts of the day are those where both patients and ‘carers’ speak. We unabashedly choose home dialysis patients to talk as our emphasis is always … “home is best” … “home is where we believe your outcomes will be the best” … and here are our home patients to back that up with their experiences!

We allow the home patients to tell it, in their own way, un-coached and warts and all, and sometimes rather graphic stories emerge that we wince at (and that we might have preferred had not been said) … but that is part of the education process.

During home training, we train the patient. Of course, family and friends are welcome … and come in. Some take great interest and seek to know detail. Others do not.

In our home assessment visits, we try to involve the family as much as possible in decisions about space, position, plumbing installations and any building or decorating requirements. Often the kids are more computer literate and will be the ones to scroll our website and discover things from our website.

Does it always work as we would want.? … No. Do we always try? … Yes. At the end of the day, each ‘dynamic’ is different – just as each patient learns differently. Some are ‘pictorial’ in their learning preferences … so, we have a picture-based training manual. Some like electronics … so we have DVD’s etc. Some like written manuals (which sometimes may need translating into other languages) … so, we offer manuals.

Above all, we try to encourage home-based care. We always promote it as ‘the best’ option, if you can … and remember, we believe far more ‘can’ that most of us ‘professionals’ are trained to allow. But we can only sustain home if we support the patients well once they are there. We think we do passably well at that. And, to have sustained, always, between 25-30% of our HD patients at home plus a further ~20% of our total dialysis population at home on PD … so that 45-50% of all our patients (HD and PD) are in the home … we think must be doing something right.

I should add here that we are not the front runner in Australia or New Zealand in home dialysis - though we do, I think, have the biggest percentage (or the second biggest as Christchurch in New Zealand may still take first prize) of our HD dialysis patients at home. Others, however, have far larger PD programs than we do. One of Australia’s largest dialysis programs in New South Wales sustains >60% of all their dialysis patients at home on any home modality though most of their patients are at home on PD and not HD. Furthermore, remember that Hong Kong (with a huge dialysis population) sustains 80% of their dialysis patients, at home, on PD. Yes … 80! So, no, though my own unit is successful at home-based care, we are not at the top of the home tree - certainly not when PD is added in to the mix - though (and I am not going to be at all shy in saying so) our home HD program is a beauty.

Interesting that you should mention Hong Kong because there’s an article from The Wall Street Journal posted on RenalWeb about AWAKs. Apparently the reason so many dialysis patients in HK are at home is because the colony simply doesn’t have enough space or nurses to accomodate their large D population in clinic. Necessity is indeed the mother of invention in this case!

Thanks for your reply. My neph has never mentioned any kind of educational program to me, much less to anyone who cares about me. Everything I’ve learned about renal disease and its treatments has come from sites like this.

Re Hong Kong dialysis

While you are, in part, right about space and workforce issues as drivers for their PD program, they also have had enormous success and outcome benefits from PD - perhaps in part due to the smaller Asian body habitus as a contributor to the success of PD there. I have been invited to visit and have spoken in Hong Kong on a number of occasions over the last decade - especially after they determined to set up their home HD program. They, in turn, have sent teams nurses and doctors on 2 or 3 occasions now for a 2 week in-service training program at our unit … so we have a strong relationship now with both the Princess Margaret and the Queen Elizabeth Hospitals in Hong Kong. Their home HD program has been hugely successful and is expanding rapidly with new patients going home almost weekly now. They, too, have taken great interest in our water conservation and re-use systems and our solar powered HD dialysis program. They are planning on setting up similar systems for conserving their water and power resources, as we have done.

The ingenious designs they have come up with to shoe-horn HD equipment into small spaces are extraordinary. Their energy and enthusiasm for dialysis in the home is infectious. Having already had an 80% ‘home’ ethic through PD, home HD is a natural extension of the ‘home is best’ concept. They, too, have robust education methods to prepare the patient and the family … an essential, if real progress and sustainability is to be assured for any home program

I don’t know if you have ever been there but Singapore and Hong Kong are now both 1st-World-Plus city states of enormous drive and frightening potential … and it has been immensely ratifying to have been part of their drive to excel and expand their dialysis programs. Next month I will be lecturing in Beijing, where similar giant leaps are being made.

Exciting times.

The fact that pre-education does not take place in the U.S. is a major factor why more people aren’t dialyzing at home, especially HHD. But that must also include informed consent as Bob Lockridge lectures. People need to balance outcomes vs. what they want their living quarters look like, and there’s no reason why the house must be in disarray (exception to my own room). If family members, especially the significant other, want their partner to have the best chance of living a longer and more fulfilling life, it should be a no brainer.

Just yesterday I was at my podiatrist and he said one of his staff member’s brother-in-laws was starting dialysis. We started talking and she told me his wife didn’t want to bring blood in the house. However, at least I convinvced the sis-in-law and expect a call from the patient.

Your pre-education routine is what is needed in this country.

I absolutely agree, Richard

And … the precedents are there. John Moran (an Australian in a previous life) certainly had an excellent pre-dialysis education program going at Satellite Health in Oakland and Palo Alto back in 2006 and, if memory serves me correctly … Bill will correct if I am wrong … so did North West Kidney Centers in Seattle.

I am sure there must be a huge number of pre-dialysis programs right across the US … please tell me I am right.

Vancouver in BC has had an especially robust system - though that is Canada. The program there is similar to the current practices here (which have been running routinely for 3 decades now) and Michael Copeland has, I think, published this experience and the clear outcome advantages or pre-dialysis education. I could find his paper if you wanted me to, though his is not the only published work … there are a raft of others, too.

As I said, you can’t force people to come and, try as we might, there is a rump of patients who resist all efforts - whether through denial, fear, or other causes of disengagement - to take up our offers. Nevertheless, the vast majority do, and it is an ideal opportunity to present home as the best option, to show off the benefits of ‘home’ through home-based patient, patient-delivered vignettes at the the sessions … and the process becomes self-fulfilling.

It leaves me numb to think this isn’t a standard routine everywhere.

In case any professionals are reading this message board, I wanted to remind folks that the MEI has produced 6 FREE decks of CKD patient education slides–with learning objectives, scripts, quizzes, and a how-to guide–called How to Have a Good Future with Kidney Disease. The 6 decks are:
• Coming to Terms
• Kidneys & Kidney Disease
• Slowing Kidney Disease
• Transplant
• Dialysis and Your Lifestyle
• Your Money & Your Life

You can download the whole kit in PC or Mac format from Please note that the files are BIG and they take time to download. At some future point, we plan to do webinars with the slides, both so folks with CKD can see them and so professionals can get a sense of how to work with them. So far, we’ve had more than 1500 downloads.

Dr. Agar, do you require or encourage training someone other than the home patient in cannulation? I’ve read some stories from people in the US who are being told that they are required to learn how to cannulate their spouse/partner who is the one on dialysis. Apparently this is in case of an emergency or the patient is ill and cannot self-cannulate or some such happenstance. How do you address this in your own clinic?

Our home patients self-cannulate. We don’t train a carer to do so.

We think (and encourage our patients to think) that their own treatment is their own responsibility. Others in the home have enough other stuff to do … and we don’t think it is wise - or, often, long-term sustainable - to put additional stresses on an already stressed family member.

In our experience, few fail at home within this model. From here-say, the drop-out rate in the US is large … while here, it is rare. We wonder if the high US drop-out rate from home therapies is a combination of an inadequate emphasis on self-reliance … a ‘you can do this’ approach with the patient … and over-reliance on the carer who, already saddled with a raft of additional relationship and home-running responsibilities that the patient can no longer assume, cracks and gives up.

Do we miss out, then, on any patients who might otherwise be managed at home? … possibly, a few. Yet, we have manage to sustain a stable 25-33% (currently 28% of all our HD) of our HD patients at home under this model. NB: our total HD [home + facility] = 84% of our total dialysis number while a further 16% of our total dialysis number (low by national averages) are at home on PD [mainly APD].

So … despite our ‘don’t train the carer, train the patient’ approach, we seem to manage to maintain a reasonably successful home HD program. I should also say that all our home HD is nocturnal, long, slow, frequent HD … mean 5 nights/week and mean hours a little > 8hrs/session. We have no short daily dialysis in the home though we do have some for our frail patients in the facilities.

Our home dialysis program is based around self-management, self-care and self-responsibility. While we also provide ready respite, re-training or bridging assistance from the home training unit in times of trouble, our patients soon come to the realisation that they are the best carers for their own access and many of our patients won’t let anyone near their fistula other than themselves.

I knew that would be your answer. haha Well, I’m happy to report that the two social workers I have spoken to in this regard have really pushed the self-reliant view, thank goodness. I sometimes think that some clinic managers along with some transplant centers get some kind of power rush in putting up as many obstacles as possible just because they can.

Thanks for your reply. I don’t think I’d let my husband anywhere near my fistula, thank you very much. He can rarely find the mustard in the refrigerator…

Another quick question…what do you advise when a home hemo patient is too ill to self-cannulate? Say, s/he has the flu or something that isn’t even related to ESRD and is barely able to get out of bed, not to mention self-cannulate. Do you advise such a patient to go to your clinic or to hospital? If there is no carer/spouse to help with cannulation, what happens in such a circumstance? thanks.

This is a good question!

First: remember that while the home training unit (HTU) and the staff who work in it is dedicated to the concept of training for and maintaining in the home, it is, when it comes down to it, a facility. Not, mind you, a facility that operates under the common perception of a facility - the ‘have it done unto me’ approach - but, a facility none-the-less.

If a patient in a ‘standard’ facility were too ill to attend the facility, you would expect (as would I) that they would need at least brief admission to a hospital in order to restore a sufficiently robust level of health sufficient to allow their return to their routine ‘travel and be done unto’ 3 x week conventional program at a free-standing, non-hospital-based dialysis unit - ie: a return to facility-based dialysis … yes?

Importantly however, our HTU is set up to provide ‘respite’ care for those of our home patients who need it. This may be to help home patients over cannulation difficulties, or minor illnesses, or family issues at home. For this, they must travel to and from the HTU (just as a conventional facility-based patient must do … but for ever) at least for the period of time required to solve their home issue.

This, clearly, would be no different to any patient having to attend a facility-based program 3 x week (except we always ‘respite’ in the HTU at a minimum 4 x week).

If a home-based patient is too ill to self cannulate, we would treat that in exactly the same way - with HTU support through the illness … but we bring the patient back to the HTU and not to a facility service. For that period, the patient is, in effect, no different to a facility-based outpatient … as are most dialysis patients in western countries.

But, just as if a facility-based patient is too ill to attend their facility and (ergo) they are admitted, then if a home-based patient is too ill to travel to and from the HTU (in effect, then a short term facility providing respite), that patient would be admitted to hospital too.

On discharge, the ‘respite’ process at the HTU may also be used to provide a re-training or caring ‘bridge’ to home if the patient is unable to immediately return to self-care.

The issue is to ensure that there is a sufficient ‘respite’ capacity in the HTU … ie: spare and dedicated respite chairs. So far, we have managed to achieve that, though admittedly, it has strained us on occasion - especially as the size of the home program has expanded.

The trickier problem … and one for which I have no right answer … is ‘how to shake loose a home patient from the home’ if we think, through the efflux of time and/or illness, that the patient is now no longer safe to continue to dialyse at home. This is a problem we have discussed, often, nationally and locally … and we have had to face once or twice. It can be a very difficult process to negotiate. All I can say is that we ‘negotiate’ this on an individual basis … and it is never an easy task. I have to say that we find it easier to get patients home and sustain them at home than to get them back again!

To assist in this potential ‘down the track’ loosening process, part of the training for home should be training/educating/advising for the time if and/or when ‘home’ may no longer be a tenable prospect. This can be a hard sell, as once patients get home to self-reliance and self-esteem, that can be a strong bond to shake.

It is akin to telling an older person that they are no longer safe to drive a car and that their driving license is therefore to be revoked. As you know, this can be a devastating realisation to an elderly citizen who, rightly, feels that removal of their right to drive also removes their independence … and it does! A similar bombshell is dropped, when telling a home dialysis patient that, from now, it’s going to have to be facility-based care because we think they are no longer safe at home. Just like the elderly driver, they (and their families) rarely agree. For the patient, its loss of trust and loss of independence: for the family, it is car-pooling, and expense, and dependence. It’s never easy.

This is why it is so hard to get a system to commit to home care - though in Australia we are blessed with a system that does. For the dialysis team, it is so much easier to turn to production-line dialysis (a la Henry Ford’s Model T), send the patient down the street where a whole lot of arms can be held out, where patients can be done unto and, at the same time, shift the burden of costs and the responsibilities for transport onto families and others … oh, and look the other way.