A plea for a unified voice

Ask Our Experts Dr. John Agar, Nephrologist
1

I have decided to try to post this, concurrently, on several key internet sites frequented both by ‘informed’ dialysis patients (or dialyzors) and by dialysis-user thought leaders – some but not all of whom are also dialyzors themselves. I have asked both the DSEN and Fix Dialysis websites to consider posting it too.

I am a distant but involved witness to the US-centric current struggle. It seems to be a struggle driven by many disparate yet essentially similar groups – all of whom seek one goal: to achieve recognition and acceptance of, and funding for ‘better dialysis’.

In my view, current dialysis does not provide good dialysis.

This statement broadly applies … except for what I would call the ‘enlightened’ programs – programs that offer and promote both intensive patient education as well as a range of flexible options including daily, nightly, short-hour and long-hour, facility-based and home-based care. These enlightened programs also must (and do) fundamentally include access to of all the options and choices of duration and frequency (as above) after open discussion with a now- educated patient.

An educated patient + an educated nephrologist and delivery team + an enlightened program unfettered by funding biases or profit-seeking = better dialysis.

Better dialysis may mean many different things. These might include but are not restricted to:
• Better biochemistry
• Better wellbeing – both during and after dialysis, the abolition or lessening of treatment-associated clinical symptoms, shorter post-treatment recovery times
• Better outcomes – whatever the outcome measure may be: survival, rehabilitation, return to work, sleep and well-being, exercise tolerance or sexuality outcomes … individual goals vary but the end aspiration is always the same – a better outcome than is or can be achieved by conventional, facility-based, 3 x week, low-level-interest, one-size-fits-all, Kt/V-only-driven dialysis as it is now commonly delivered across the US
• Better equipment with simpler patient-capable interfaces and patient-enabling technologies
• Better patient (and staff) education programs
• Better access to modality flexibility and modality choice
• Better understanding from the provider (the ‘givers’ of dialysis) of the needs of the provided (the ‘receivers’ of dialysis)
… and there is so much more.

Those of us who have actively sought these and other ‘betterments’ have either:

  1. had difficulty in providing ‘proof of method’ in an RCT-driven medical culture – recognising that an comparative RCT in a lifestyle health-care program like dialysis is impossible to fairly conduct – and denying the wealth of unopposed observational data gathered over decades that attest to the better outcomes of more frequent and more gentle, longer dialysis
    or …
  2. had difficulty in presenting a unity of message - the multi-site, low-impact divide-and-conquer ‘trap’ of the internet – where a multitude of small voices are crying the same message yet no one voice is focusing the direction and strength of that message.

I have seen with a mixture of (1) pleasure at the enthusiasm of so many who have set up blogs, information sites, facebook(s), twitter(s), Q&As … the list is seemingly endless … see Bill Peckham’s blog list at http://www.billpeckham.com/from_the_sharp_end_of_the/2010/12/tracked-ckd-blog-list-has-been-updated.html yet also (2) horror at the division of the ‘forces for better care’ that this enormous list implies …

It is this division, this dilution of purpose, on which I seek debate. I have argued against the splintering of the forces for ‘better dialysis’ – the dissipation of one single loud shout into disorganised chatter. If possible, this chatter should be addressed, coalesced and brought together into one strong voice for change.

While it is immaterial (to a degree) who the leader of that voice may be … that it is one voice, that it has one focus – better dialysis – and that it achieves its goal with clinical precision and speed … is all that matters. Individual egos should be suppressed for the greater good.

  1. Good dialysis is not machine-centric

  2. Good dialysis is not site-specific … though most who read this would likely agree that dialysis sessional duration, dialysis frequency, and dialysis regularity – the rhythmic spacing of treatments to abolish ‘long-breaks’ of >48hrs minus treatment length – are key components, whether provided in the home or in a facility

Some will argue for home HD, some for PD …

Others will argue on behalf of specific equipment …

Some seek better rehabilitation …

Others seek funding change …

All of these are important in their own way but none are, individually or of themselves, the key.

Each is individually blogged, Twitter’ed, Facebook’ed, and in other ways extolled.

None are cohesively combined at any one single, non-partisan site.

Some might argue that ‘Home Dialysis Central’ was the most effective clinical ‘better dialysis’ site until splinter groups eroded its collective voice - though my own interest in it remains strong and, in my view, it remains (or should remain) the core information site for home therapies as it is not (nor should it be) equipment-specific but home-relevant to any mode or machine …

Others might feel that ‘Dialysis at the Sharp End of the Needle’ is the most effective ‘political’ site for the dissemination of ideas and exchange of views …

The recent appearance of the ‘Fix Dialysis’ URL as (in part) a response to the ProPulica article – though I am aware Gary Petersons thinking on a ‘fix’ for dialysis has had a far longer/deeper gestation than as a simple PorPublica response – shows ‘collective’ promise and may prove a most useful vehicle – but if so, it must be then supported by and/or referenced as the core site for a unified push …

While the proliferation of sites, on the one hand, is an indication of the depth of feeling and interest, on the other, multi-site mini-blogs have tended to dilute the message and diffuse the essential argument.

I seek discussion – at what ever site you support – of the concept of one strong, unified internet voice … at whatever current or future ‘address/URL/website’ is chosen … led by whichever of the lead voices has the greatest chance of achieving cohesion … but chosen they should and must be.

So, too, must a single target for that message be decided. And the target must be hit – bulls-eye – again and again until the message strikes home.

Without a central site and a lead voice, the pleas to the chosen target for change will never work and those who must be made to hear, will never listen.

NB: Postscript!

I have suggested that the focus for this discussion be at FixDialysis.com though I am posting it as well at HDC and DSEN

2

I’ve just seen this over at FixDialysis. A unified voice that represents all of us would be welcomed. We all do have the same goal. I would like, though, some guidance on targetting our message. Here in the US, the new session of Congress convenes later today. I will be having a new US Representative, and I am already in the process of drafting a letter to him outlining how dialysis as now practiced in the US (the thrice weekly, inclinic template) results in more cost to the American taxpayer and is less efficient for the patients. Is there someone else I should be writing to? I am not a “professional advocate”…I am just a regular patient who has come to see that the current way of delivering dialysis in this country is counterproductive in so many ways.

3

PS…could someone post this over on I Hate Dialysis?

4

Dear MooseMum

Unfortunately, i am not the one to answer this. Someone closer to the action, someone who knows your political system, how to lobby, whom to lobby, how lobbyists work, what strings to pull, how hard to yank them … in America, of America …

I see your problems, I nearly (note, not completely) despair of your system … but that’s why, as a concerned outsider who cares, I penned my ‘plea for a unified approach’.

But … the unifier(s) and leader(s) of that approach must be from your shores, not from far away.

Discuss it at Fix Dialysis - or wherever else you may - but discuss it, decide it, then go for it.

5

Well, I wasn’t expecting you to have the answers…my questions were directed to any American who may visit this website.

6

When I was a kid, there were 4 TV channels: NBC, ABC, CBS, and PBS. When I was in high school, they added Fox. If, say, advertisers wanted to get out a message that would reach MOST Americans, they just had to buy ad space on those 5 channels. Now there are 200+ channels. There wasn’t any Internet when I was a kid, either–and now there are millions of websites, and more each day. Unfortunately, the splintering of information sources means that the chances for a unified voice are virtually nil. We can’t unring that bell, and we can’t expect that folks will ever, in future, coalesce around any one site. If anything, we’ll see MORE splintering. So, what we need to do instead is the sort of cross-posting and cross-linking that you’ve done here with this post. Each morning now, I read Salon, the LA Times, the NY Times, CNN, and USA Today. In the dialysis world, I think mostly the same folks travel the sites that are most interesting.

But can we get better dialysis here? Yes, I think so, or I wouldn’t keep beating my head against the wall of the US dialysis care system. Things are changing. Not as quickly as I’d like, but they ARE changing, and more change is coming.

Incidentally, MooseMom, if you go to I Hate Dialysis, why don’t you post Dr. Agar’s question? :slight_smile:

7

I’d prefer to get Dr. Agar’s permission first. His post is more than a question…it is a coalescence of several ideas. He has expressly chosen specific sites on which to copy his message, and I don’t want to presume and overreach.

8

Post wherever you can or wish

I am more than happy to have this (and my other more recent posts at the DSEN and/or Fix Dialysis sites) put up wherever you (or others) feel they may do good.

I take Dori’s point re the difficulty of putting the genie back in the bottle regarding the proliferation of internet sites but, if a post like mine can at least galvanise discussion and (perhaps) suggest that as a political move, a focus for the discussion (or a summation of any number of discussions at other sites) be fed into a single site … that may be a potential way to focus thought.

Feel free to copy and paste my post from here to anywhere you think it should be read. Perhaps it would be nice to reference this site as the origin … and HDC is still, in my view, the ideal host for clinical discussions regarding kidney failure and dialysis - especially home dialysis - but I suggested (Dori, don’t be angry at me) the Fix Dialysis site as a good vehicle site to host a ‘movement’ at - even if we DO have to bend and broaden Gary’s rehabilitation focus to the benefit of the greater good.

HDC, in my humble view, remains the best site-for-all-people clinical home dialysis site around … with no exceptions!!

9

Hi John,

I assume that Gary includes MEI in “among the few wanting to emphasize renal rehabilitation, patient employment, additional reimbursement tied to employment/rehabilitation, and nocturnal in-center hemodialysis,” since I direct the Life Options Rehabilitation Program (http://www.lifeoptions.org that defined it in the first place back in 1996, and got the ball rolling.* (You may not be aware of this other site of ours–we have a total of 5 websites of our own). The reason we push home (and in-center nocturnal) treatments as hard as we do is because we want rehabilitation. So, Gary and I are on exactly the same page, and I would say that both of our sites are equally good vehicles to host a movement. :slight_smile:

*This website is actually our MOST trafficked, with about 100,000 unique visits/month, probably because it has been around since 1997–and will make a great vehicle for communicating with the community when we have a chance to get it revamped.

10

I feel a little chastened, Dori.

I am clearly unaware of all the history - and of the variety of sites … most particulary this one - that may be suited for a unification of purpose and progress.

I hope, too, that I didnt upset you by suggesting Fix Dialysis as a host site - that probably reflects my lack of knowledge and understanding of the ‘history’ behind the genesis of the various sites and maybe I picked wrongly - but I suspect that in my lack of understanding (I am far away), I saw a clinical (HDC) vs political (FixDialysis) difference between the sites when, truly, there may be no such differential.

Whatever the case - in my naivette, I just wanted to try to focus peoples’ attention on the main prize here - an improved dialysis milieu … across the board, irrespective of the barrows we each push according to or interests. The site for the discussion (and I still believe you all have to have that discussion) is, in the end, subservient to the purpose.

You will know me for my support for long, slow, frequent dialysis. Others support short frequent dialysis. Some back a certain piece of equipment, others another. Some want rehabilitation front and centre. Some are fighting for the home patient, some for those locked incentre. Some are driven by personal experience - some by sadness, some by fear, others by bitterness.

But, one thing seems to be in common … all want and seek ‘better’ (in whatever way each ‘fancies’ they may bring ‘better’ about) than the standards and access to broadly good quality care at an affordable price that is ‘modern dialysis in the USA’ for the vast majority today.

I still hope that some good discussion will occur and that people dont go off-track (though I know, sadly, they will). It is important that the message remains ‘on song’ … and this requires a strong moderator - and I should, truly, have thought of you for that role.

In the end, I am (a) an outsider (b) essentially a provider (and thus, to some, the ‘enemy’ © not even a US’ian, so (d) should I be really ‘in’ the discussion at all?

But … you know me and can therefore understand why I keep sticking my oar in. It’s the nature of the beast!

Dont be too angry with me … I promise that my heart is in the right place!

11

OK, I’ll post your comments on IHD and will cite your site (oooh, it’s late…“cite” “site”) and HDC. The people over there on IHD are on the front lines and have a lot to offer. I know they are eager for as much information as possible. That will be my task for tomorrow.

12

I couldn’t agree more that we are fundamentally doing dialysis WRONG in the U.S. And, I suppose, if Congress had the interest and the will, they could do something to address. Foremost in my mind would be getting rid of the “wall” between Medicare Part A and Part B. Dialysis is an outpatient (Part B) benefit. Hospital stays fall under Part A.

The problem is that the biggest savings to the system of optimal dialysis is hospital stays. But since those are in the “wrong” part of Medicare, the dialysis industry does not get credit for it. The incentives are NOT aligned, then, for better care. Contrast this to a system like Kaiser Permanente in Southern California. They get a fixed payment for each person, and it includes hospitalizations. This means it’s in their best interests to take good care of people on dialysis and keep them OUT of the hospital.

I’m not a big believer in Congress, though. Getting their attention on this issue–without spending millions of dollars–just doesn’t seem very doable to me. Others are working on this. We focus our efforts on policy and CMS. They are smaller and can move faster. They can’t change Medicare structure, but they can do other things that could make a huge difference.

13

Well, I have to say that I have been reading this with a great deal of interest - in many places…

Dori, I LOVE what you are doing with all of MEI (you too Dr. Agar - I do believe that I wrote that you were the Patron Saint of Nocturnal Dialysis - and it takes a saint to navigate in this online environment - well done.) I also that it is great to have new, fresh voices like MooseMom. (FYI MM, I am known as MEINUK over on IHD).

My thoughts are that Advocacy begins at home. In my work, I have seen that very few people on dialysis are even on the internet, let alone ready to storm Washington. Changing legislation won’t correct the immediate issues at hand, but sites like this, kidney school, and IHD change individual lives every day for the better. There is hope in education. And slowly, we are educating the practitioners as ell as the patients.

Sometimes when people are inflamed by rightiousness, they miss the whole picture. Like how about enforcing rules and regs that are already in place. There are amazing changes on the horizon, in both technology, and possibly in legislation. I am still wondering how the new PPS will play out. Technology is most exciting. I have been waiting for the Baxter Deka machine since I started dialysis. Sorbent Technology gives me goosebumps. I speak about it every chance I get.

Placing blame and fiery rhetoric like I have seen lately on the “Advocacy” front is nothing but smoke and mirrors. As Dori noted, Renal Rehabilitation has been around for a very long time. It is in place, it is just not being used/utilized (I for one would love to have it mandatory in all facilities). If you read the CMS CfC’s and interpretive guide you’ll be shocked at how many guidelines are being ignored. Home Hemo and self care is on the books, it is incentivised, and slowly, care is being wrestled away from the profiteers. It is too slow for most, but it also didn’t reach the state that it is in overnight. Greed feeds on apathy.

Dr. Agar, there are people who are working to make Dialysis better in the United States. Our gestures aren’t grand. We don’t grab headlines. But people are listening. As was once written, it is like turning an ocean liner. I feel that this polarization and finger pointing that I read on line lately is harming the therapy. You were right when you wrote that we need to work WITH the industry to change it. I just hope that more people REALLY listen to what you are saying.

You have written about something that has bothered me ever since I joined the on-line community. It is playground politics here on the `net, but despite all of the sturm und drang, the message IS being heard, we just need to keep talking about it in the outside (non-internet) world, every chance we get.

I don’t think that I will opine again on this debate. I just wanted to let you know that it is appreciated.

Best,

Anna Bennett

PS Dori: I put your postcards in EVERY mailing that I send (HDC “There’s no place like home” and Kidney School). We’re almost out of the Kidney School postcards with Nancy on them. I’ll send you an e-mail about getting more next week!

14

[QUOTE=Dori Schatell;20472]I couldn’t agree more that we are fundamentally doing dialysis WRONG in the U.S. And, I suppose, if Congress had the interest and the will, they could do something to address. Foremost in my mind would be getting rid of the “wall” between Medicare Part A and Part B. Dialysis is an outpatient (Part B) benefit. Hospital stays fall under Part A.

The problem is that the biggest savings to the system of optimal dialysis is hospital stays. But since those are in the “wrong” part of Medicare, the dialysis industry does not get credit for it. The incentives are NOT aligned, then, for better care. Contrast this to a system like Kaiser Permanente in Southern California. They get a fixed payment for each person, and it includes hospitalizations. This means it’s in their best interests to take good care of people on dialysis and keep them OUT of the hospital.

I’m not a big believer in Congress, though. Getting their attention on this issue–without spending millions of dollars–just doesn’t seem very doable to me. Others are working on this. We focus our efforts on policy and CMS. They are smaller and can move faster. They can’t change Medicare structure, but they can do other things that could make a huge difference.[/QUOTE]

Dori, I am becoming more in love with the company I worked for 11 years, and now a as patient for 4 years on dialysis, I am more than blessed to have medical group that understands preventive care and improving outcomes to save costs. There are still areas to improve such as access to nocturnal dialysis which up until this month was on a case by case basis. This month, my nephrologist started a pilot study on nocturnal dialysis at Kaiser Sunset. I contacted some of the bigwigs at Kaiser today on the FHN and relating that to the historical perspective as well as Scribner’s Hemodialysis Product. The FHN showed the truth of the frequency portion and since they ask for only RCTs at Kaiser, I cited the NCDS showing time as an independent factor proving the time part of his equation, both from RCTs.

I most likely will not hear back, that is the manner of many admins in all health care industry, but I have at least given them the opportunity to reply and utilize the information.

As far as Kaiser though, my wife and I would have already moved to Idaho permanently but for the health care issues. Sadly Group health is NO Kaiser when it comes to serving the patient as I found out last year. So, if we can find a small cottage, we will spend summers there, winters here. For me, there is no wall between Part A and Part B. Too bad the entire system wasn’t set up that way. Now they want to do away with Senior Advantage. In my opinion, from my experience that would be an error. However, I do understand that not all Advantage programs offer what Kaiser does, well back to the non-profit vs for-profit debate.

15

Hey, Anna! Thanks so much for chiming in, and for your very kind words. (BTW, the New Kidney School cards are gorgeous! Order some soon. :-))

Beth and I worked with others in the community to include as much rehab in the 2008 Conditions for Coverage as we could–and there is quite a bit in the Interpretive Guidance (which the surveyors use when they visit clinics). The Surveyors are also trained to look for rehab elements, and we help with that training whenever we can, when the surveyors come to the national meetings. (Beth has a far bigger role in that than I do). But, if even the infection control regs are not being uniformly followed, it’s easy to imagine how little the so-called “nice to have” things are to get done. We chip away at it, as you said.

As far as the providers, clearly most of them are out there to make a profit–some are Fortune 500 companies with stockholders they are responsible to. But from what I’ve seen, they are also monitoring quality across their clinics and making active and continuous efforts to improve and to educate. They are not the enemy! (Not that you were saying they are, but some people seem to think so.) They are important allies in our mutual quest to improve care. Think about it: the two largest US providers account for about 2/3 of all clinics, and the mid-sized ones add probably another 20% together. When one of the big guys makes a major commitment to home dialysis, it puts economic pressure on the others. There is a competitive advantage when one provider offers work-friendly, family-friendly, LIFE-friendly treatments. So, others come on board. Right now, I believe that all of the large and mid-sized providers have a VP position for home dialysis. That’s huge and represents a tangible commitment to change.

I think we’ve been watching a small snowball begin to roll down a hill. It’s been gaining momentum, and getting bigger. IMHO, we’re going to see changes happening faster, since the process has really been underway since the Aksys PHD machine (finally) launched in 2002. More interest in home HD has raised all of the PD boats as well–and the bundle will really push that. New machines are on the near horizon, and each one gains the public’s imagination and helps raise awareness. Desperate Housewives even has a dialysis plot, and LOTS of folks are working to get a message about home dialysis inserted into a show that has 120 million viewers (talk about a Tipping Point!) So, stay tuned… :slight_smile:

16

[QUOTE=Dori Schatell;20479]Hey, Anna! Thanks so much for chiming in, and for your very kind words. (BTW, the New Kidney School cards are gorgeous! Order some soon. :-))

Beth and I worked with others in the community to include as much rehab in the 2008 Conditions for Coverage as we could–and there is quite a bit in the Interpretive Guidance (which the surveyors use when they visit clinics). The Surveyors are also trained to look for rehab elements, and we help with that training whenever we can, when the surveyors come to the national meetings. (Beth has a far bigger role in that than I do). But, if even the infection control regs are not being uniformly followed, it’s easy to imagine how little the so-called “nice to have” things are to get done. We chip away at it, as you said.

As far as the providers, clearly most of them are out there to make a profit–some are Fortune 500 companies with stockholders they are responsible to. But from what I’ve seen, they are also monitoring quality across their clinics and making active and continuous efforts to improve and to educate. They are not the enemy! (Not that you were saying they are, but some people seem to think so.) They are important allies in our mutual quest to improve care. Think about it: the two largest US providers account for about 2/3 of all clinics, and the mid-sized ones add probably another 20% together. When one of the big guys makes a major commitment to home dialysis, it puts economic pressure on the others. There is a competitive advantage when one provider offers work-friendly, family-friendly, LIFE-friendly treatments. So, others come on board. Right now, I believe that all of the large and mid-sized providers have a VP position for home dialysis. That’s huge and represents a tangible commitment to change.

I think we’ve been watching a small snowball begin to roll down a hill. It’s been gaining momentum, and getting bigger. IMHO, we’re going to see changes happening faster, since the process has really been underway since the Aksys PHD machine (finally) launched in 2002. More interest in home HD has raised all of the PD boats as well–and the bundle will really push that. New machines are on the near horizon, and each one gains the public’s imagination and helps raise awareness. Desperate Housewives even has a dialysis plot, and LOTS of folks are working to get a message about home dialysis inserted into a show that has 120 million viewers (talk about a Tipping Point!) So, stay tuned… :-)[/QUOTE]

Thanks Dori, I spent the evening yesterday reviewing all of the programs for Rehab already in place with the Feds and States. I also had a wonderful time reading through the Conditions for Coverage on Social Workers job duties and mental health and rehab issues. The CFCs are filled with rehab, mental health evalutations starting with at least annual KDQOL SF-36 evaluation, BDI-II is also used and routine nursing, physician and social work evaluations and referrals for mental health issues which are also covered in Part A, B and D of Medicare. The wheels are already there, but truly without enough dialysis, who can take advantage of these programs? The answer is not many if you spend a sizable portion of each year in the hospital or ER because of undertreatment. HRQOL is best improved by medical interventions:

http://www.kdqol-complete.org/about/interventions

http://www.kdqol-complete.org/about/hrqol

One area I am concerned is that for the most part, Social Workers have not been part of the general dialysis advocacy circles that I have seen. Of course, MEI is unique in how many areas it gets right, but I do believe that we will need the Social Workers on board with the docs, nurses and patient advocates that we have working together already. Perhaps you can facilitate that as well Dori.

In any case, it was truly eye opening to see all that the Feds and State folks have already put on the books. The entire rehab issue is actually pretty much complete as far as regulations. However, over sight and enforcement of what is on the books? Not so sure we are doing well in that area yet, nor have we reached optimal dialysis in-center.

The key note address at the ADC this year is quite telling, Glenn Chertow will speak on an OBSERVATIONAL study from the USRDS data base on mortality and length of treatment time. Even the critics are coming full circle at this time.

Lastly, the market place will be a very powerful motivator of bringing home dialysis to America and perhaps CMS did get the bundle right after all. I believe the jury is still out yet on how the bundle will impact care in America, but if it drives it back to where it started, reduced costs and improved outcomes by sending people home, then CMS should receive the applause for accomplishing that task. Time will tell, but the market forces are quite real. It could become quite interesting in the next couple of years.

17

This is one of our behind the scenes efforts, Peter. Beth Witten, who also moderates this site, is a long-time renal social worker with national prominence–and specific expertise in rehabilitation (she was one of the first Life Options Council members), employment, and reimbursement. The only professional organization for renal social workers is a council of the NKF (they don’t have their own organization), the Council of Nephrology Social Workers (CNSW). We support Beth’s time to moderate the CNSW listserv, which reaches, we believe (it’s hard to say, since no-one knows how many renal social workers there are) about HALF of all of the US renal social workers. She is in daily contact with them–and you can be sure that they are getting rehab messages, and home dialysis messages, and help to reframe their inside-the-box thinking and to solve problems by considering other treatment options.

It would be hard for most social workers to do an out-an-out advocacy effort. Instead, they work through the NKF and can advocate for dialyzors within their own clinics. We believe it would benefit ALL renal social workers to become members of CNSW. So, if you encounter any who are not, please tell them about it!

18

On my return from a few days away from the office, I have read with interest the various thread responses to my original email “A Plea for a Unified Response” at several of the key sites I watch - in particular here at HDC and over at FixDialysis.com.

As often happens – it is natural and healthy – the original thread slowly morphs (like a Chinese whisper in a classroom) from the original thrust into different paths. Richard Berkowitz has pointed this out a few posts back.

These thread ‘paths’ are usually triggered by individual interest, experience or passion … yet ultimately lead the threads to meander away from the intent of the thread of the original post.

I have seen my ‘plea’ diverge to discussions re:-

• the reported mishaps and ‘horrors’ of in-centre dialysis experienced by particular relatives – subjective but perhaps truly reflective of some (but not all) in-centres.

• the up-coming ADC and its (1) attendability, (2) registration costs and (3) whether it is podcast/webcast/recorded or ‘blogable’

• the importance of, the input (or lack of it) from and the impact of the social worker in dialysis services

• the ‘warning’, from one, that I should not seek to diminish the seminal light shone onto dialysis by (1) two of the great inspirators of dialysis: Belding Scribner and Chris Blagg … and, for those unaware, Chris Blagg is a long-time close friend and a much-loved personal mentor … or (2) from Seattle, the unchallenged birth-place of home (and better) dialysis. Far be it that I should do so … rather, it is with their lead ever in mind that I continue to take an interest in trying to improve dialysis practice, in my own way.

While I would never seek to do the latter, the other discussions – each important in their own way – do, in my humble opinion, divert from the main game.

And what is that main game? What I think I meant by a unified approach is …

  1. Complaint never succeeds without construction
  2. Blame is never a substitute for education and improvement
  3. In-fighting divides while the unification of forces is far more likely to be successful
  4. Identifying enemies is unhelpful, while identifying allies makes for a stronger forward momentum
  5. Segregation into sub-groups diffuses and confuses while integration creates a common purpose
  6. Alienation of friend or foe simply reinforces barriers while enthusiasm for a common goal tears them down
  7. Above all: do not digress … progress

Now, as I think of what’s been said :

(1) Complaint vs Construction

While past errors, deficiencies and (often) overwhelmingly personal system shortcomings inevitably colour our individual views and trigger understandable feelings of blame and accusation, more importantly and beyond the personal, such instances simply ground and inform the need for improvement. The recounting of problems without the proposal of achievable outcomes to avoid or prevent their recurrence is, in the long term, unhelpful. Bitterness hides the true possibilities for progress beneath a hubris of angst.

Complaint and blame stem from bad experiences: bad experiences stem, most commonly, from poor understanding and bad practice: poor understanding and bad practice demands, as their solution, broad, system-wide education towards better understanding and more transparent practice.

So … what path(s) lead to better educated dialysis delivery teams and to more efficient dialysis practice? Dori is right … regulation to a set of standards, regularly reviewed, regularly inspected, and routinely enforced would eliminate ‘the bad guys’.

But, regulation simply sets the baseline. Kt/V did that! K/tV set a minimum standard – yet no-one saw it that way … well, some did, but those some were not heard… It was seen as a goal and not as a minimum.

Regulation is OK to ensure a minimum standard but should never be accepted or thought to be the end of the game. There is always ‘better’ out there.

(2) Ways Forward

Several have popped in and out of discussion:

Reuse: eliminated by law in Australia in the early 90’s (?1992) and in most other countries except the US … why do you still allow it? The data is all against it.

The killer weekend: and, yes, we still enforce that in Australia too – except for home patients (of which we have vastly more) … why do we still allow it? The data is all against it.

‘Technicians’ vs nurses: not an argument I want to open here. But, is a technician as good, less good or better than a trained nurse? We use nurses. Should dialysis still permit the use of undertrained staff? (enter … regulation!)

Industry as ‘the enemy’: my view? … get over it. No … they are your ultimate allies. Learn to understand that. Don’t reject of fight with them, propose, then marry them - though no marriage is always easy.

Professional groups: to ANNA, NKF, RPA … there are many … extend an olive branch. Criticism creates voids. Unity of end-purpose creates opportunity through trust in a single achievable goal – better dialysis (for all)

Home vs in-centre: home already does well(ish) … though many US home patients are on short hour high frequency, high ‘this-and-that’ (flows and rates) dialysis … in my personal view, this is not as good a dialysis regimen as long, slow, frequent, low ‘this-and-that’ dialysis. But while home does way better than centre – and I agree it is the centre patients who need the most help – all dialysis can always improve.

Social work and a rehabilitation profile to dialysis: absolutely. Both are interdependent factors that all patients (home and/or centre) should be able to access. All dialysis patients can achieve more than they already do! Even the good(est) ones! But for the mass, nothing is done. Here, Gary is right and his FixDialysis 4 x quadrant model – which started all this – must be front and centre in the mind set, every day.

I ramble … sorry

I just wanted to draw the ‘threads’ back together for a moment.

What do others think?

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Hi John,
I completely concur that regulation (in the form of requiring annual surveys, vs. the Q3 years–or MORE–that we have now) is a minimum standard and doesn’t get us to an improved end game. Still, we do direly need to clean up our in-center act.

IMHO, the best way to get rid of the 2-day “killer weekend” is to get rid of the administrative hassle of charging for a 4th treatment each week. I may be naive about this, but what I think this would do, fairly quickly, is 1). Make it more possible for clinics to switch to a 2-week every other day treatment regimen that would eliminate the 2-day gap, and 2). Make it more financially feasible to send folks home for more frequent HD–during the day, at night, or a combination. The question is what unintended consequences there might be of, say, having CMS just eliminate the need for medical justification (I mean, does it REALLY make sense to have to justify better dialysis when the worst dialysis is the default standard of care?! Seriously?!). So, we’re looking into that.

If it helps any, 2011 is the Chinese year of the Rabbit. Apparently, that’s a year in which it’s easier for groups to come together and collaborate. :wink:

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As a mere pre-dialysis patient who is trying so hard to educate myself (do patients have any role in this “unified voice”?), I will simply offer to help in your endeavors in any way that you may see fit. If you see a purposeful role for patients such as myself, just let me know.

I hope you all get this sorted out by the time I become a dialyzor. I will be following your discussions with great interest!