ESRD System- Dependence or Independence?

Discussions for Patients, Family, and Friends HD For Patients
1

It seems to me that the ESRD System fosters dependence. Eventhough self-care and home programs are supposed to be options/goals, I have encountered no doctors or staff in numerous units who have this mindset. It’s a, “Lean on me I’ll take care of you and make decisions for you” environment.

Whereas the importance of pre ESRD education is being covered in another thread, and that is the first essential component of care, I am concerned about the sort of education that allows patients to begin txs with confidence. First, the patient must be recognized as an integral part of the tx team and encouraged to select the tx modality of his choice. For too many patients that choice is between in-center hemo and pd. In too many units it is completely withheld from patients that there are options of self-care, SDD and SND.

If not premitted other choices a patient winds up in-center hemo, he is thrust into a maze of tx problems that will leave him disoriented and fully into the dependence mode. He will not break out of this mode for a long time unless he is very self-motivated and figures out the questions to ask. Even then, he may not get the correct answers by asking of his doctors and staff as often they have an incomplete knowledge of the tx due to minimal company training or due to not always providing info that is in the patients’ best interest.

This process of either ushering patients into in-center hemo, or pd only, and not informing them of self-care, SDD and SND and how patients might live a more healthy and independent life, robs one of the best care. It fosters a cycle of dependency, causes unnecessary tx issues and can take years off a patient’s life.

I would like to know why in the U.S. we lag behind other countries that recognize the best tx options and provde the training patients need to become independent? It seems that with the exception of a small minority of progressive units, we have things backwards in this country. Just like with Fistula First, I would like to see a full scale revamping of the ESRD system with priority given to educational initiatives that are already on the books as well as opening the doors to tx modalities that truly encourage as much independence as each patient is capable of. Independence for all capable patients, not dependence, is the way to better health with kidney disease.

2

Jane
I know I am a long, long way away from you guys but it blows me away the knowledge that you and others have and the way you can advocate for yourself. It seems to me that Americans have that side of things sewn up.

If it wasn’t for the fact that I had read Agar’s Nocturnal Dialysis website I doubt whether I would have found out about it. When I go to my Neph I seen a line of in centre patients waiting to see him who know virtually nothing about their treatment and would be too afraid to consider home dialysis.

Why are you not doing it at home yet exactly? You have all the knowledge you need and more. Is your clinic not encouraging you to try this or is it too inconvenient on the home front or do “you need to take the bull by the horns” or are there other issues you don’t really want to discuss here?
Cheers
8)

3

Hi y’all,

Jane wrote:

I would like to know why in the U.S. we lag behind other countries that recognize the best tx options and provde the training patients need to become independent? It seems that with the exception of a small minority of progressive units, we have things backwards in this country. Just like with Fistula First, I would like to see a full scale revamping of the ESRD system with priority given to educational initiatives that are already on the books as well as opening the doors to tx modalities that truly encourage as much independence as each patient is capable of. Independence for all capable patients, not dependence, is the way to better health with kidney disease.

Actually, Jane, I could easily have quoted your entire email, because I couldn’t possibly agree more with you. One of the reasons the non-profit Medical Education Institute built this site to raise awareness and use of PD and home hemo is because, in the current system, training for home therapies is the only way we can be certain that patients get any education whatsoever once they start dialysis.

All of our work (years of research, more than 2 dozen published studies) points to the vital importance of patients maintaining control over their lives–which is exactly what in-center hemo tends to take away. American adults don’t tend to do well being passive and dependent. Our whole culture is based on independence and self-sufficiency.

As far as why we lag behind other countries in using home therapies, I suspect there are a number of reasons that include:
– Once centers are built, administrators want all the chairs to be filled

– Dialysis professionals largely haven’t caught on that if they help working-age patients keep their jobs and their health plans by making home treatments more accessible, the patients, Medicare, and the centers will all do better

– Many doctors don’t trust patients to actually do their treatments at home, and prefer to have them in centers where they can be supervised

– Dialysis staff may mistake ignorance about dialysis (who really knows anything about dialysis before knowing that they need it?) for stupiditiy, and then assume that patients couldn’t possibly be capable of learning to dialyze themselves

– A tremendous amount of energy has been expended in the renal community to develop standards of “adequacy” around the status quo–e.g., through clinical practice guidelines. But not nearly as much effort has gone into looking outside the box for optimal care that will allow patients to feel their best within the current reimbursment constraints. (See this month’s “Topic of the Month” on Hemodialysis: Why More is Better" if you haven’t read it yet. http://www.homedialysis.org/v1/rotating/0106topicofthemonth.shtml.)

It takes time to change the mindsets of medical professionals and to change an entire system of care. We’ve been at it for a dozen years now, and we have seen some progress–and we’ll keep pushing until we get closer to where we want to be.

4

I think another reason for such a slow change is a lot of centers just don’t want to do the work necessary to set up home programs.

5

Hi Beachy,

Our unit is open to starting a program and looking into it at the moment. Three other patients and myself got together and spoke with the doctors and they each agreed that home txs is the way to go. They all said that if it were them they would do home hemo So, we are waiting for the program to begin.

6

Dori writes:

Actually, Jane, I could easily have quoted your entire email, because I couldn’t possibly agree more with you. One of the reasons the non-profit Medical Education Institute built this site to raise awareness and use of PD and home hemo is because, in the current system, training for home therapies is the only way we can be certain that patients get any education whatsoever once they start dialysis.

All of our work (years of research, more than 2 dozen published studies) points to the vital importance of patients maintaining control over their lives–which is exactly what in-center hemo tends to take away. American adults don’t tend to do well being passive and dependent. Our whole culture is based on independence and self-sufficiency

It has certainly been true in my experience that education frequently is not a priority or can be inaccurate in-center. I have often read where home program patients state their staff take more time with them to educate. It depends on the management of the unit and the experience of the nursing staff as to the availability and degree of education patients will be afforded.

I think we would all agree that this board has done more than most any other avenue to enlighten patients to the superior benifits of home programs and provide a place where we can learn from one another. Is there a bio on Medical Education Institute and how you and Beth got into this work, Dori? I wonder why other medical professionals don’t share their expertise as you both so freely do? Would like to see the Industry hold a national symposium entitled something like, " Trading the Mediocrity of Short In-center Txs. for the Superior Quality/Independence of Home Txs."

Read your list of possible reasons our country lags behing others in dialysis patient care, but find it incomprehensible that the leaders of CMS and the dialysis industry could be so shortsighted. I don’t think there has ever been an organization specifically of home patients/professionals to combat the myths and lobby for optimal care. Can patients join Medical Education Institute or could another organization be formed to proclaim needed change?

7

Jane I think that it all flows from how we pay for dialysis in this country. What would a true patient centered system look like? More frequent dialysis and the independence/self esteem/education promoted by home dialysis is what leads to a higher quality of life. Our reimbursement system should make an effort to give incenter patients the same quality of life and choice enjoyed by home patients. That would be patient centered.

Medicare should establish a fee schedule for forth, fifth and sixth runs in a week. Then providers could seek to provide options under expanded reimbursement. Patients would have to be educated in order to evaluate their choices. A true patient centered system would encourage patients to have a high Dialysis Product (Scribner’s formula <weekly frequency squared>x<average run length in hours>) and provide options to achieve their target. If all you wanted was a DP of 45 then you could do 3 days per week (d) 5 hours per treatment (h) or 4d 3h or 5d 2h or even 3d 2h + 1d 6h. Rather then an outside of their control kt/v target patients would have a goal that presents options.

I think over time people would find DPs in the sixties or seventies feel pretty good and some may even wonder what DPs in the 200s feel like. Of course there are limits to how much flexibility units could achieve but I think if Medicare would reimburse for every treatment it would give incenter patients the hope of a better quality of life. If people are able to try forth, fifth and sixth treatments incenter many would end up at home. It’s a big step from 3x incenter to 5x or 6x at home. More frequent incenter dialysis would allow smaller steps on the road home.

The red text was edited for clarity and here is the link I should have provided http://www.therenalnetwork.org/images/HDP.pdf to a full explaination of Scribner Dialysis Product.

8

Bill,

You inadvertently left “frequency squared” out of your Scribner formula, although you used it in all your sample calculations. To me, this formula reduces a lot of complex stuff down to a very important rule. My view is that an HDP of 72 is minimum and the more, the better. While how you feel is obviously important there are subtle but important things that can only be measured – for example, the reversal of left ventricular hypertrophy after years of predialysis high blood pressure which is likely to happen only with the very high hDP that comes from 6x nocturnal.

Mel

9

Thank you Mel - I did forget to write squared. It should have been <weekly frequency squared>. I agree with you that a HDP of 45 is too low but if someone decides that is enough for them then it’s okay by me. The HDP formula is a way to evaluate ones treatment schedule once one decides on a target HDP.

I think the HDP reinforces the idea that CKD 5 is a journey. When one begins hemodialysis maybe with some residual function, then a lower HDP could work; as experience is gained then the dialysis reimbursement system should support higher HDPs. The current reimbursement system locks people into an unhealthy regime that promotes dependency.

I heard a medical researcher tell a story about experiments where rodents were placed in water and firmly held (safely above water but unable to move), when released these rodents commonly drowned even though they were perfectly capable of swimming. I understand that humans are far more complex than rodents but I believe any living organism is severely impacted by a loss of control. As Dori noted “Our whole culture is based on independence and self-sufficiency” this on top of our inherent humanness makes it understandable that the lack of control engendered by our ESRD reimbursement system is a recipe for disaster, or rather is a recipe for a 22+ mortality rate.

10

Because we’re already the converted in this forum, I think we forget that some of the greatest resistance to longer and/or more frequent hemodialysis comes from dialysis patients themselves. The great majority of these can’t imagine having to do what we are doing, no matter how good we say it is, and irrespective of what support there might or might not be for it among nephrology staff.

Pierre

11

Poor rodents! :frowning:

12

I agree Pierre however I believe that an expanded reimbursement system would allow progressive units to “sell” extra treatments one at a time. With out having to make a long term commitment I think patients could have a three day a week base schedule and then consider taking an extra treatment without making a long commitment. When people try more frequent dialysis I think they come to understand the false time savings that three day a week schedules seem to offer. I think the facts are on the side of more frequent dialysis so “sales” could be achieved through educaiton.

It would require some salesmanship but I think the product is so good that providers could successfully “sell” treatments one at a time until patients demand to regularly dialyze more frequently and ultimately dialyze at home.

13

Hi y’all,

I wanted to revive this thread, because, once again, I’ve really been struck by the difference in knowledge between folks who have undergone training for home dialysis, and folks who have somehow managed to survive for some length of time on in-center hemo, never actually getting any formal training, but picking up some knowledge (some right and some not) along the way.

For those of you who’ve done both, how important was the home training for your knowledge level–not just about the treatment itself, but for, say, correcting myths that you used to believe in, things like that?

For those of you who haven’t yet had home training, how have you gotten yourself up to speed on what you need to know?

14

Hi

Tip of the hat to you for the stop on you know what.

Yes I have gain a good understanding of home is better by a mile. I hope to start in Apirl on nxstage. Will get back to THE Good people of this site after I get things started and set up at home. Thanks to all the GOOD people who have shared there own story.

Best to All
Bobeleanor :smiley:

15

My education level on ESRD went up at least 90% during home hemo training. There is nothing like a 1 on 1 Patient and Nurse for 6 weeks. Once dad was on the machine we had 5hrs to discuss any aspect of dialysis we wanted. I also think the education improves tremendously because during clinic visits its a Patient, Nephrologist and Nurse without interference of other people in the room. To be realistic, I have yet to see a unit where anyone had the time to educate patients. Seems like everyone is busy taking patients off, putting them on and answering alarms. It would be beneficial (although not practical) if most dialysis patients could go through home hemo training even if they didn’t want to do it themselves and remain in-center.

16

I have to say that the Internet has been the most important factor in my knowledge level. I can not imagine what my interest or level of involvement would be in the world of ESRD without the Internet.