If your experience has been anything like mine, most patients I encounter are not proactive in their care and I wonder how more than a minutely small percentage would become interested in taking control of their txs through going into home programs. I did hear one account of a unit that started doing 6x a week incenter SDD and even patients who had previously been “no shows” were scrambling to get to every tx, because the txs were shorter, they could eat and drink a little more and they felt so much better. And is it Australia that requires all capable patients to train for home programs? Do you have any thoughts on what the dialysis community could do to inspire more patients to become confident and independent in their txs whether through getting into home programs or while remaining in-center? In the current system, all but the most highly motivated are doomed to fail and even the highly motivated face obstacles that are so unnecessary and contrary to optimal care.
Hi Jane
Australians needing dialysis usually go to units in fully govt funded hospitals where most(not all) of the older and manypatients are happy to stay doing around 3x 4 hours per week. Only a small percentage are willing to take on home training because of the tyranny of distance between govt training centres outside city areas or because of lack of knowledge of what is available. I am not sure whether all that are capable are encouraged to do home hemo. I think it would depend on the enthuisiasm of your nephrologist or in my case that and reading Prof Agars Nocturnal Dialysis website among others,that made me go straight into home training and bypass dialysing in centre.
As there seem to be only 2 machines ( I think) available for home patients in Australia (Fresenius and Gambro) the decision of what comes home is made for you. Everything is paid for except plumbing and meds which are govt subsidised anyway. I guess that takes the angst out of which machine to choose except as yet there are no Nxstage, Akseys ar Allients to drool over yet!
The system is not much different here really, although as I understand it, anybody here that wants to do home training will be funded to travel to the nearest centre even if it is hours away.
8)
Hi y’all,
Jane wrote:
Do you have any thoughts on what the dialysis community could do to inspire more patients to become confident and independent in their txs whether through getting into home programs or while remaining in-center?
Jane, you’re making this way too easy for me! Do you have a stash of soapboxes with my name on them? Because you keep hitting so accurately on all my buttons. 
Do I have any thoughts on how to inspire patients to be more confident and indepedent? As it happens, I do:
Provide kidney care using a chronic disease model, rather than an acute care model.
So, what’s a model? In this case, it’s a way of looking at the world. Most American healthcare is delivered using an acute care model. Let’s imagine you have an illness (say, the flu). You feel lousy, but it will either go away relatively quickly or it will kill you–you don’t have the flu for years. What’s your job as a patient? Compliance: Getting yourself to a doctor and following orders. The staff’s job? To take care of you. The goal is a cure–the disease goes away and you take your life back.
The problem is, chronic diseases don’t go away. So the acute care model doesn’t work. Think about it: even on in-center hemo, you are only supervised in the center for about 14 hours a week, out of 168–about 8% of your time. So, 92% of the time, you’re on your own to eat the right things, not drink too much, take all your meds, report your symptoms, and come to all of your treatments and stay the whole time. And what you don’t know can hurt you.
The goal of treatment for chronic disease isn’t cure–there is no cure (at least, not yet). Instead, it’s adaptation to the changes in your life, and management of day-to-day symptoms so you can have the best possible quality of life. Your job can’t be just compliance–because merely following orders doesn’t give you the tools you need to adapt, to problem-solve, to ask the questions that will get you the best care so you can live the best life. Your job is self-management, which includes following the treatment plan (which you have had input into as a partner in your care), managing your symptoms, and keeping yourself safe (e.g., by catching mistakes before they harm you). The staff’s job in a chronic disease model is to care for you–and help you learn this extensive self-management job. To self-manage well takes a lot of knowledge. And one of the best ways to get that knowledge is to go through home dialysis training.
Independence isn’t just a nice thing to have, it’s a fundamental part of quality of life for people with kidney disease. I truly believe that to encourage more independence and confidence among patients, we need to help them understand that they do have a job in their care that no-one else can do for them (though some have more help than others with it).
The Medical Education Institute put together a CKD patient/family kidney learning center to help people learn their job in their care. It’s a hands-on self-management training course offered online for free, 24 hours a day: Kidney School™. Developed as part of the Life Options program, which is supported by unrestricted educational grants from Amgen, Kidney School is visited by nearly 9,000 users/mo. and downloaded more than 6,000 times/mo. The more we can spread the word about Kidney School, the more headway we can make in helping the renal community move toward a chronic disease model, and helping patients become more independent.
[Dori writes:
quote]Independence isn’t just a nice thing to have, it’s a fundamental part of quality of life for people with kidney disease. I truly believe that to encourage more independence and confidence among patients, we need to help them understand that they do have a job in their care that no-one else can do for them (though some have more help than others with it). [/quote]
I think it is right here that we must think of some creative ways to get through to the majority of the patient population. In every unit I have been in, staff say they have given up on educating the patients as most of them are in total denial or don’t care about participating in their care. Patients are seen as uneducatable.
To self manage one must posess the skills to self-manage. What do you suppose would be the common denominator in so many patients being unable to self-manage or choosing not to? I’m not sure what percentage of patients are from the lower economic level lacking educational skills and more worried about how they are going to pay the rent then how their dialysis txs are going. And then there are the elderly and others with comorbid condtions. Add to that the mentally challenged. But I have also encountered successful degreed individuals on dialysis who are in as much denial as those at the other end of the spectrum, helpless as babies when it comes to taking control of their txs.
Even if one has the will to self-manage, I would venture to say that if he has the misfortune of having 3 bad txs in a row, he could get so out of wack that he might never fully bounce back. Unless one has a strong will power or faith, dialysis errors can take one down quickly into a spiral he may not be able to get out of. I really believe that there are many in this predicament- they’ve been physically and emotionally knocked down and can’t get up.
So, it seems to me that not only is the system self-defeating because it is based on an acute model rather than self-management, but for the system to suceed one would have to unlock the keys to how to inspire the wide gamut of patients to desire and learn self-management skills. Something is seriously amiss when the doctors, nursing staff and even the social workers believe that educating patients is hopeless.
Beachy,
Thanks for the report on Australia. I know I’ve read posts where someone either said all capable patients in their country are ushered into home programs or at leaste encouraged to do so. Maybe it was the Canadians 
Don’t want to spread international myths 
Jane, You have made some very good points. But I think one of the biggest stoppers in home dialysis is “fear”. The number 1 question I get from people (including nurses) is weren’t you scared. I have to admit I was scared and everyone telling me I could do it, didn’t take that feeling away.
I think as program grow and there are alot of home patients the “fear” of it will become minimal on both the staff side and patient side.
An interesting observation is this. When our nocturnal program started it was difficult to find patients willing to go this route. In fact most of the patients in the program originally were miles away from the center. However the center now offers NxStage also and the enrollment into the program is faster. Do you think it could be because the NxStage machine looks less intimidating and by all accounts is less work.
Hi y’all,
Marty wrote:
Jane, You have made some very good points. But I think one of the biggest stoppers in home dialysis is “fear”. The number 1 question I get from people (including nurses) is weren’t you scared. I have to admit I was scared and everyone telling me I could do it, didn’t take that feeling away.
I think you’re absolutely right, Marty. Jane noted:
In every unit I have been in, staff say they have given up on educating the patients as most of them are in total denial or don’t care about participating in their care. Patients are seen as uneducatable.
The first thing I thought of when I read her observation was fear. I should have said earlier that hope is always the first step. To be motivated to learn, people need to believe that it’s possible to have a good quality of life and to live out a reasonable lifespan. In our research, the two key questions that we virtually always find that patients have is:
– How long will I live?
– How well will I live?
They may never ask these questions out loud (since they think they already know the answers and don’t want to hear someone say them), but they change their lives and their dreams because of them. I’ve known patients who refused to buy a home because “I won’t live long enough to pay off the mortgage.” (Hey, how do I know I’ll live long enough, even without kidney disease?). I’ve known a patient who was in college when she found out she had kidney failure, and she broke off her engagement and had her tubes tied, figuring her life was over. It wasn’t. The first thing people need to know to be able to move forward into self-management is that it is possible to have a good life after kidney failure, if you keep a positive attitude, learn all you can, and take an active role in your care. Without those messages, nothing else will break through the terror and the denial.
More patients should know that some of the first people who started on dialysis in the U.S. in the mid 1960s are still alive today. Yes, the national statistics are dismal. But statistics apply to groups, not to individuals…
I think that one of the reasons that the nocturnal and daily therapies have been growing is that they give people hope for a life that is less altered by dialysis and more like the lifestyle they had before. But that’s just my opinion.
Seeing is believing. I have 2 sister both were totally against me doing dialysis at home for dad. There reasoning was…if home dialysis is so much better how come all most everyone is in-center. Now that they have “seen” the difference and “seen” that I can handle it they sing a whole new song. All the educational articles I gave them to read made no difference.
They had to see it to believe it. Our home nephrologist upon meeting dad for the 1st time said you know somethings are just to good to be true, but this really is true. He had heard about daily and nocturnal dialysis but he became a true believer when he “saw” dad and the labs with his own eyes.
The reason I want to do home hemo is that at 49 yrs, I’ve had many medical problems (since birth) and found that I could take care of myself. I still went to see doctors and had to go into the hospital from time to time, but was no big deal. Also , part of the reason is that at the center it is very noisy and has constant chatter. The temp in the center is warm on some days and cold on others. The set up is too close and you’re right on top of people, no screens , everyone in your pod can see you and hear the doctor talk to you. The biggest reason is freedom to set up a time that is good for me to do tx, so I can still live my life. 
Dori writes:
The first thing I thought of when I read her observation was fear. I should have said earlier that hope is always the first step. To be motivated to learn, people need to believe that it’s possible to have a good quality of life and to live out a reasonable lifespan.
In my experience there is such a lack of education in units, that I can see how patients would become frightened and in denial. It’s easy to think the worst when one gets hurt on his txs all the time as short in-center txs are not comfortable/safe. And the knowledge of SDD and SND is completely hidden from patients. So, since there is no encouragement towards quality care and optimal txs., patients are kept in the dark and they shut down unless they are highly motivated individuals who can see around it. They are victims of the system.
Unless units voluntarily give patients the best in education and guide them to the best choices for tx., patients are at their mercy. Even highly motivated patients can be very sidetracked if they are usually given bogus answers about their tx. If it were not for outside sources of info. that highly motivated patients seek, they would be kept in the dark, too.
I have often been stunned to hear patients describe aspects of their tx that they got from staff which is totally inacurate. But they trust blindly and thus pick up wrong information. Likewise, dialysis staff trust blindly and don’t realize when they have been given poor/incomplete training. Out of maybe over one hundred staff, I’ve only met a handful who were aware and honest enough to admit that their training is incomplete. They know something is wrong, because they can’t answer patient questions. But the rest will just make up answers or give canned answers the company tells them to say.
It doesn’t seem the majority of patients will break out of the mold unless they are given true education and improved txs. The majority are very vulnerable as it is easy to take advantage of less than highly motivated individuals. I don’t think the majority of patients will ever take a real interest in their care unless they are provided true education, a valued role and improved txs. I really wonder how many will be free enough to exit the units into the home when they see others doing it unless they are first built up and respected in their care. And many do not have the home situation for home txs. so the best hope they have is getting good txs
in-center.
Of all my years on dialysis what I’ve observed is that some clinics don’t want the patient to know everything. The only thing they’ll tell you is what to eat and what not to eat…
When it comes to how , what, when about the dialysis machine beeing used on you the only thing they’ll tell you is kidney here, blood here, and pump here…har har har… :lol:
Probably the only patients who learn it all are those who get involved with their care and want to know more, so we as patients seek it. Isn’t that the best way to go?
Perhaps the patients who seek education is more economical…
Jane my motivation did not come from education. My motivation came because the unit was 45 minutes from our home and dad wanted to dialyze at home and I knew other patients were doing it at home. The education regarding the benefits of more treatments for me were a plus not a motivator.
There can only be two approaches to care. Either staff babies patients, keeps vital education from them and discourages them so that they become dependent on staff. Or, staff encourages patients to do all they can do for themselves and provides the essential education that makes this possible. Staff can act negative, or upbeat and nice, but if they don’t foster independence, they are depriving patients of what it takes to have optimal txs.
As far as which patients are good candidates for home txs, the patient must have a decent home situation and family support. Some patients like Marty’s dad can make this connection as the home and support system is in place. But others need more encouragement, education and support to realize they can make it as an independent patient at home. They need to clearly know they will be taught the skills to self-manage themselves and they will feel so much better that they can have confidence switching to the home for their txs.
Those who don’t have an adequate home environment/family support can still benefit if they are offered training to do self-care in-center and are provided better txs. such as the unit previously mentioned that has an in-center short daily program. It should not be assumed that all patients are helpless to take care of themsleves. They should not be pushed to do so before they are ready, but should be provided the means by which they can develop the skills necessary for dignity and independence. The perentage of patients who are not capable of caring for themselves to any degree are the only ones who should require total nursing care.
Again, the system as it currently is, sets patients up for dependence/failure. The entire system would have to be revamped as the exisiting focus robs patients of their dignity and independence and then blames the patients (the victims)! Actually, everyone on both sides of the fence is a victim of this wrong medical model and the statistics bear this out. How can the dialysis medical people be proud of this record? I know they find it very discouraging and the staff are almost as depressed as the patients. With a record of 23%+ mortality, annually, it will take a concerted effort of leadership from both industry and advocating patients to convert to a successful medical model.
I don’t disagree at all that patients should be educated. But I remember when dad was in-center the staff was so busy putting patients on and taking them off that you were lucky if you got 3 minutes to ask a question and get an answer.
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The Expert Patients Programme (EPP) is a NHS-based training programme that provides opportunities to people who live with long-term chronic conditions to develop new skills to manage their condition better on a day-to-day basis. Set up in April 2002, it is based on research from the US and UK over the last two decades which shows that people living with chronic illnesses are often in the best position to know what they need in managing their own condition. Provided with the necessary ‘self-management’ skills, they can make a tangible impact on their disease and quality of life more generally.
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