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.