Let’s Change the Default Dialysis Option to HOME
Why is in-center HD the default choice for everyone who start up dialysis treatment almost all over the World? In my eyes, it ought to be the fallback option when all possibilities for home treatment—either PD or home hemodialysis (HHD)—have failed. Even limited care should be considered before we send people to a facility where they are treated as if they are totally incapacitated.
In my native country of Denmark, only 5% of the dialysis population are on HHD, while 19% of them use PD.1 Compared to the United States, those numbers are good. According to the U.S. Renal Data System, the US numbers are 1.3% for HHD and 7.3% for PD.2 I would say the Danish numbers are really bad but the US numbers are nothing short of appalling.
It certainly isn't good enough when we know that 90% of dialysis staff (doctors and nurses) would chose some kind of home modality if they were faced with dialysis.3 Let's do the numbers again: 90% of dialysis staff would prefer a home modality but they only prescribe it to 8.6% of their patients.
There is something seriously wrong here, folks! It's not just double standards. It's also a culture that has gone completely off the rails. It is a throwback to the bad old days of the 19th century where the doctor always knew what was best for patients and the latter never needed to think about their own wellbeing. So, what is it that stands in the way for people getting a treatment that in every way is superior to the standard in-center treatment? There are many answers to that question, and I am only going to look at one of them.
It is my firm belief that the dialysis default option has a lot to do with attitude: of policy makers, of staff and of patients . I am going to concentrate on the last two groups. I think we can change the policies if patients and staff have a shared (or at least a similar) vision.
The most important limitation to people being given the choice of home dialysis is educational. Far too many patients are never told about home modalities. And an even greater number is never properly introduced to the options that are available for doing their treatment in the comfort and safety of their home.4
I am not going to discuss the fact that people are never told in this post. But I do want to say it's a tragedy when people are not introduced to the treatment option that could be the best and the safest for them. IMHO, the people who run clinics where this happens should find themselves another job, they are simply not worthy of working with chronically ill people.
When it comes to education about home modalities there are a number of things to consider. All patients need to be presented all of the treatment options. There should be no excuse for any clinic for not doing so regardless of their size, previous policies or any other lame excuse that exists out there.
All staff should be taught about the different treatment options that are available for their patients whether they are offered at their particular clinic or not . It's not like there are thousands of different types of treatment out there.
That is why the My Life, My Dialysis Choice tool made by Dori and the team at MEI and Dr. Agar is so valuable to all of us. If you haven't seen it yet, I strongly urge you to take a look at it here: http://mydialysischoice.org.
Not only should we know what our options are, but we should know about them well in advance. Unless someone is suddenly hit with chronic kidney failure, there should be no excuse for not discussing these things in a timely manner. Patients should never be forced to make a choice when dialysis is imminent.
There are several reasons why it is good to start the discussion about modality options early. It gives the patient time to get used to the thought of living the rest of their life with some kind of treatment (we have to remember that a transplant is as much a treatment as dialysis - it is not a cure.) It takes time to let thoughts of having a chronic illness sink in.
Time is also needed so people can discuss the different treatment options with their families.5 There are so many things to consider that it takes time for most people to weigh their options and come to a conclusion about what works best for them. It is not done in an afternoon—like I have seen it done in some cases.
And, finally, a lot of people are often too affected by their illness when they are faced with dialysis. The impact of reduced kidney function on cognitive performance is one of the things that is easily overlooked by many. There is no doubt that reduced kidney function has a great effect on one’s mental capacities like memory, attention and alertness; all of which are important when we have to make such important lifestyle choices as choosing the right modality for a treatment that might last the rest of our lives.
In my mind, it should be mandatory for coming dialysis patients to meet with patients who are already on dialysis. Preferably they should have the opportunity to learn from people who have chosen different kinds of dialysis so they can learn the pros and cons of each modality before they make their choice. Evidence has shown that peer influence has a greater impact on modality choice than that from professionals.4
To me it's a complete mystery why doctors and nurses—who only have a theoretical knowledge of the dialysis process—should be better at teaching potential patients about their treatment and the different modalities. Pre-dialysis teaching and dialysis training should be done by staff and experienced patients in conjunction.
By showing first hand and by exchanging ideas with those who are about to start dialysis, I think way more patients would naturally chose to be in charge of their own treatment, whether it be at home or in a limited care setting. But it requires that staff at the dialysis clinics open up for peer-to-peer training.
The above becomes even more important when we look at how once one modality has been chosen people are reluctant to change it.5,6 It is simple human nature to want to conserve the status quo. And when one considers the importance of dialysis treatment it is easy to understand why this is so. Dialysis is anxiety inducing in and of itself and any kind of change connected to it will ramp up the anxiety for most people.
This brings me back to my initial point: Home dialysis should be the default choice when a new patient starts up dialysis.
If we make it the first choice it will become the norm, just as it was about to be in the 1970's before dialysis clinics started popping up all over the place. Yes, in 1972 approximately 40% of patients were treated with HHD.7
When it comes to staff training it is imperative that they are formally taught about home dialysis. It is a tragedy that nephrology fellows in the United States can go through their education without ever learning about home dialysis.8 I don’t know if it’s required in my own country of Denmark, but I do know that they are certainly not properly trained in the home modalities. And then I ask myself, how can we expect staff to be properly trained if the doctors who run the clinics have such a poor understanding of the different treatment options?
A simple solution would be to have patients on home dialysis come and teach coming nephrologists. The doctors need to see—in the flesh—that there are people out there living healthy and productive lives while on dialysis year after year. The only way we are going to change the paradigm of dialysis is for doctors to see that dialysis patients are not always sick and close to death. It is really that simple.
Most of the things I have mentioned here could be changed if we all could change our minds and look at dialysis treatment in a different and more positive light. There are no insurmountable obstacles here. The greatest limitation to getting more people on home dialysis is a conservative mindset where the preservation of the existing system has prevalence over the wellbeing of patients.
1. Danish Nephrology Registry, Annual Report 2012
2. USRDS 2013 Annual Data Report
3. Schiller, Neitzer and Doss: Perceptions about renal replacement therapy amongst nephrology professionals. Nephrology News and Issues, September 2010
4. Mehrotra, R. et al: Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis. Kidney International, 2005
5. Morton, Howard & Snelling: The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ, 2010
6. Cafazzo, J. et al: Patient-Perceived Barriers to the Adoption of Nocturnal Home Hemodialysis. Clin J Am Soc Nephrol 4, 2009
7. Blagg, C.:. Home haemodialysis: 'home, home, sweet home!' Nephrology, 2005
8. Golper, T. et al: Systematic Barriers to the Effective Delivery of Home Dialysis in the United States: A Report From the Public Policy/Advocacy Committee of the North American Chapter of the International Society for Peritoneal Dialysis. Am J Kidney Dis. 2011