How do I Communicate the Benefits of Home HD to my Patients? A View from New Zealand

This blog post was made by Dr. Mark Marshall on July 31st, 2014.
How do I Communicate the Benefits of Home HD to my Patients? A View from New Zealand

First and foremost, I’d like to frame this piece as being a perspective: this is how I ply my trade, and this is how I work with patients. I can’t really speak for other doctors, and everyone has their own way of doing things.

Next, a word on the context in New Zealand. New Zealand has a LOT of home dialysis. Over half of all dialysis patients in the country are on home dialysis. In my hospital, this proportion is somewhat lower, at around 45%. I want to say outright that this is not achieved by rationing of dialysis to get a healthier patient pool. For instance, the prevalence of treated ESRD in my district was 1448 per million population at the end of 2011, almost twice that of the UK and comparable to that in the US at the same time. This pretty stunning result around home dialysis is instead the result of a common clinical culture amongst health care professionals (HCPs). Most of us believe (to a greater or lesser extent) that home dialysis is better for a lot of patients than facility dialysis, and also achievable. Every HCP in New Zealand has a different means of persuading or even convincing patients to give home dialysis a try, and this is what I do.

I clearly distinguish between PD and home HD. I don't really like the term home therapies; I prefer the term home dialysis and I use the terms not to “sugar-coat” anything. I also think patient selection and patient responsibilities are very different between PD and home HD, as is the lifestyle experience that results from them.

For PD, I tell patients that if they are going to have a transplant, then this is the best option for them in terms of the subsequent fate of the transplant. I also explain to them that to the best of my knowledge, patients on PD seem to have a better early survival than those on facility HD. I give them my opinion—I think carrying on PD for more than 3-4 years may provide a bad outcome in terms of survival, and PD after this point should not be automatic but rather should be re-discussed in the context of what’s been happening with the patient. And, I explain to them that PD tends to have a higher quality of life than facility HD, although this is an average, and very much dependent on the individual. (Note: I do convey to them my opinion around quality of life, which is as follows: I think patients overestimate their own quality of life, and (thank God they do so) forget what it feels like to feel well. So I remind them that when nurses and doctors say they're looking awful, and then ask them whether they're feeling awful, patients will sometimes say “no” and that they are “feeling fine”, even when the opposite is true. I make the patients very aware that shared decision-making does not mean patient-decision making, and that they have to trust our evaluations, especially around quality of life. I think quality of life is best assessed as a combination of means, including assessments by people other than the patients themselves.)

For home HD, I tell patients that it is unequivocally the best treatment for them apart from a transplant. I tell them that the “best of the best” dialysis is home HD on a frequent and extended hours basis. There has never been a time when increasing the amount of dialysis one gets doesn't improve how people feel and how long they live. We have a lot of data from New Zealand, and I show them the unadjusted and adjusted survival statistics, in a way that's digestible to them. At my hospital and within my health delivery projects, I use a health literacy organisation called Workbase (www.workbase.org.nz, http://www.healthliteracy.org.nz). They are very effective, and produce some magnificent educational materials that are more or less written by patients as opposed to health professionals. To avoid errors (or errors of omission), I have Workbase develop the materials using what I call a "fact warehouse", which is a collection of agreed-upon “truths” that HCPs accept and endorse. One of my pet projects other than home dialysis is live donor kidney transplantation. You can see the results of the project on www.kidneydonor.org.nz.

Speaking of which, one of the most important messages that I give patients is that they are quite unlikely to receive a transplant in NZ. In my opinion, most physicians and patient advocates overestimate the chances of transplant. In New Zealand, there is a 10% lifetime chance of receiving a transplant. I think it's very important for patients to realize that that their time is limited, that they are probably not going to receive a transplant, and that they should not muck around and should do the best dialysis that is possible for them.

The final thing that I tell patients is that they will be least burdensome to the family with a transplant or if they stay in good health with dialysis. They will be most burdensome to their family if they are not well, or if they require admissions to hospital, or if they have to be carted around the place by family members who would otherwise be living productive lives or working for and with their own families. Staying healthy on dialysis is a key outcome for themselves and their families, and most achievable through home HD. I think this final message is very important and it is what I thoroughly believe.

I am doing a large project with Rachel C. Walker, an academic nurse practitioner in New Zealand. Our project centers on patient choices and the drivers towards home dialysis. I'm not sure that such research has been done that well in the past. We have just finished a qualitative synthesis of the entire literature in the area, sort of a meta-analysis for qualitative papers. Alison Tong did this previously for PD, and Rachael and I have just completed the same thing for home HD. All studies identify themes around the need for more information about home HD, but paradoxically predialysis education globally is amongst the most poorly researched and possibly worst implemented areas of all of our care. What concerns me is a paucity of important information for patients contained in our usual predialysis education programs. Moreover, predialysis education is not designed or delivered by professional educators, but done by doctors and nurses for no more skilled at this task than they are at (for example) building a house. As part of this project, I'm doing in an inventory of learning styles amongst our predialysis patients along with some professional educators, to determine how our patients actually learn.

In terms of community engagement, which is a big thing for the live kidney transplantation project, I am using the same techniques that Apple uses to sell iPads. For patient education around home dialysis, I’ve not yet decided on a way forward in terms of community engagement, although I plan to use the same techniques to people used in other settings to teach very difficult subjects to people who don't particularly want to learn. Before I am to do anything, I'll be sure to talk with educators, since more answers are likely to come from this group rather than our own “amateur night” literature. With a lot of things in medicine, I find we lag behind the rest of the world. In statistics, we are 20 years behind. In predialysis education, we never started!

This is the way I approach home dialysis for my patients. I provide people with the information necessary for them to make an informed decision, and also recognize that many of them do not have the confidence or the cognitive means to actually make a choice. For these people, I give them a push towards what I think is the right thing for them, based on my own powers of personal persuasion and the generally good relationship that I can build with most people. Before I do this, however, I maximize every avenue I can to help the patient make their minds up themselves—a shared decision is the way to go for everyone concerned.

Comments

  • Dori Schatell

    Aug 12, 9:22 AM

    Interesting that all of the comments on this critical area have been from NZ--the country with the BEST pick-up of home therapies on earth! Clearly y'all are doing SOMETHING right there. :-)

    It's here in the US where I really despair. I've spent 25 years in this field, pushing home dialysis (PD and HD) as hard as we could for the past 10 years with this very website, and we've gotten some traction for home therapies. But, far too often, I still hear stories from patients who were never told about options besides standard in-center HD, or who were actively discouraged from trying a home therapy if they did manage to find one.

    Most education here for modality choice is fact-based, which fails to consider the often terrified and depressed soul at the heart of the matter. And, most of it fails to consider what PATIENTS want--which is for their lives and lifestyles to stay the way they are. We often teach people about modalities by...teaching them about modalities. That probably seems to make sense, but it's not the right approach, IMHO. The way to approach this is to start with the patient's values and lifestyle preferences, and then match a treatment to what s/he wants. The FIRST question in modality education needs to be not "which treatment do you want?" but, rather, "What do you want your life to look like?" I have to believe that if people understood the impact of their choice on every aspect of their lives, they would be far more inclined to choose a home therapy!

    THIS is why Dr. Agar and I wrote Help, I Need Dialysis! (http://www.lifeoptions.org/help_book", and why he and Beth Witten and I developed the "My Life, My Dialysis Choice" decision aid (http://www.mydialysischoice.org).

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  • Mark Marshall

    Aug 12, 3:40 AM

    Just a quick comment of clarification. I have a global lens, and my comments about the lack of research and evidence based implementation of pre dialysis education are a fact, but not meant as a "dig" at the locals who provide this service in NZ. I think pre-dialysis education is done pretty well in NZ on the whole (our home dialysis rates are testament to this), and better than most countries. However, it is far from perfect in a lot of places in NZ too, and we all should always be striving to do better. So if you think you have the perfect pre-dialysis education program, email me and I'll come and visit - I'd love to learn the recipe!

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  • Sue Goddard

    Aug 11, 11:58 PM

    Thanks Mark.
    A very dynamic view of how you "ply your trade". It is wonderful that here in NZ home dialysis is promoted to be the best form of dialysis for ESRD patients.

    I have been working with the renal population in most areas, HD, PD and pre dialysis for 30 years. I am married to a gentleman who was on HD for 12 years, had a transplant for eight years and now has a second transplant for which i was the donor. Along with all this experience I have post graduate nursing qualifications so feel perfectly suited to be a pre dialysis nurse.

    During my time with renal I have always been amazed at the strength, kindness, knowledge, patience and tenacity of the renal staff. I know how very important dedicated staff are to the patient population (my husband always says nurses underestimate how valuable they are).

    I agree we could always have more resources to educate the patients however time spent with them not only discussing their dialysis options but helping them deal with the grief process (which they deal with throughout this journey), introducing them to others with ESRD and making ourselves available at the end of the phone or in person are all very valuable resources in helping them make their decisions. Sometimes coming to terms with ESRD and dialysis has more to do with the person and their life than the actual dialysis or medical jargon. First "empty the cup before filling it up again". Time, patience, honesty and empathy are needed with these people and only then are we able to start their education, education which will continue through out their dialysis career.

    It appears that pre dialysis nurses in NZ endeavour to provide a great service. Certainly patients that I have dealt with from various services throughout NZ have always been more than happy with the education they have received. I say "keep up the good work pre dialysis nurses, I can't think of any other profession who would do a better job".

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  • Kay McLaughlin

    Aug 7, 8:54 PM

    I agree that there is a lack of structure and funding for pre dialysis education in New Zealand. I am well acquainted with the small group of hard working, educated and highly skilled pre dialysis educators who work in this country (the advantage of living in a small country). As a member of this group I personally have extensive post graduate qualifications in nephrology health care and education and know many of my colleagues are equally well equipped for this role. Our many years of providing information and support for patients and their families with chronic kidney disease (with a home dialysis focus) may have contributed to the fact that we have such high numbers of patients on home dialysis. We all know that getting someone established on home dialysis takes a team effort and as a team we are always looking to improve our performance. I look forward to the outcome of your project findings and hopefully don't need to plan a change of career into the construction business!

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  • Helen Hoffman

    Aug 7, 5:28 PM

    Agree this is a great blog - definitely one to raise the blood pressure and the hackles of us poorly skilled predialysis nurses, compared to my job, building a house sounds easy - at least you have a set of plans to follow - it is but a logical process. Unlike dealing with the expectations of the predialysis population. I don't have a teaching diploma and don't believe I need that particular piece of paper to do my job well.
    I am in total agreement with the need to have the right facts about outcomes on dialysis, that we should not sugar coat these as we present them to patients and that at times it is appropraite to nudge or guide people in a certain direction. The concept of shared decision making needs to be reclaimed by HCP's.

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  • John Agar

    Jul 31, 5:42 PM

    Great blog, Mark.

    In our uniquely friendly little corner of the globe, there are many instances (rugby, wine, and home dialysis being some) where the ANZ abbreviation should be reversed to NZA ... and, as ever in dialysis, and home dialysis in particular, you continue to show us all the way.

    In my hospital, we try ( and manage, I think) to keep pace with you ... but, if only it could be thus - nationally - in 'A' as it is in 'NZ'.

    I'll keep at it though, mate, for it is nearly as galling to be upstaged by NZ in dialysis as it is to come in keep coming in second in the Bledisloe Cup!

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