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:
- 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
- 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.
Good dialysis is not machine-centric
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.
I have suggested that the focus for this discussion be at FixDialysis.com though I am posting it as well at HDC and DSEN