New Views is an opinion piece (full text) from the editor and publisher of RenalWEB.
This ESRD-care perspective piece comments on the growing number of scientific articles and media coverage concerning high-dose/frequency hemodialysis. Researchers and individual patients have been reporting dramatic changes in health-related quality of life with daily and/or nocturnal hemodialysis. Asked for their personal preferences, ESRD-industry professionals now overwhelmingly reject conventional in-center treatment that is based on the long-held and widely accepted definition of “adequate dialysis”. The concept, validity, and consequences of this definition of dialysis adequacy are examined.The 14-page New Views article is also available in pdf format.
Dialysis professionals and patients are invited to participate in sharing their ideas, questions, experiences and thoughts, along with constructive criticism of the many issued raised in the article. Click on the "Reply" button.This message has been edited. Last edited by: Gary Peterson,
Great paper so far, though I haven't finished reading it yet. I've also noticed more & more articles on extended/continous HD and the noticable benefits for the pt. Here's another article that points in that direction, and surveyed over 6k people globaly.
What I wonder is when will we get to this point?
What device/machine will be used? mini HD/HDF machines or maybe mini wearable artificle dialyzers?
Also, what will the measurement stardard be for adequacy of dialysis? It can't soley be based on a pts 'feelings,' can it?
|<Christopher R. Blagg MD>|
Gary Peterson’s article is one of the most perceptive and important articles related to ESRD published in 2008 and should be required reading by everyone connected in any way to dialysis in the United States. Kt/V, while it became the Holy Grail for adequacy because it could be calculated so easily, does not reflect patient well being. The use of the word “adequate” was unfortunate – “minimal” would have been much better. In some respects Gary is like the boy who pointed out that the emperor had no clothes. It has been unfortunate that for so long small molecule clearance alone was regarded as so important and the clearance of middle molecules was ignored.
Gary’s description of the effects of more frequent and /or longer hemodialysis in producing the “well” ESRD patient and the impacts this is beginning to have on at least some physicians and patients are absolutely correct. More education of physicians and staff and more education and empowerment of patients are essential and, at a time when health care reform is coming and costs will become even more important, his thoughts about the future of ESRD and a new philosophy are also right on.
Dr. Scribner, who started the successful treatment of chronic kidney failure by hemodialysis almost 50 years ago and who is quoted by Gary, would have been delighted by this article. For many years he was concerned that the emphasis in the ESRD Program was on money and not on the patients. In 2003, when the Annual Dialysis Conference was being held in Seattle he sent the following message to be read at the meeting – “The goal of more frequent dialysis is to provide the opportunity for all dialysis patients to choose how much time and effort they are willing to devote to dialysis in exchange for better health and wellbeing, not to mention the marked reduction in adverse symptoms occurring during and between dialyses that comes as an added benefit of increased frequency of dialysis.”
He went on to describe what he saw as the “Effects of More Frequent Dialysis – The annual cost of dialysis will drop. Innovations and automation will make the task of self-dialysis simpler to comprehend and less work for the patient. The resulting healthy, well-nourished, normotensive hemodialysis patients will incur lesser additional health care costs than their sickly, malnourished, hypertensive counterparts on short three times weekly hemodialysis.”
Christopher R. Blagg MD
This posting was edited to add bold font to existing text at the request of Dr. Blagg.This message has been edited. Last edited by: Leigh,
Like Dr. Blagg, I was thrilled and delighted to read Gary Peterson's perceptive commentary. Yes, every single person involved in the kidney community should read it. My perspective is a bit different and deeply personal because I am not only a nurse, but also was the care partner for my late husband. He was on conventional home hemodialysis for nearly 25 years.
We always followed a simple three word dialysis philosophy--"More is better!" We dialyzed for a minimun of 5 hours, when 4 was the norm and sneaked in extra treatments on occasion. After all, why dump out unused dialysate liquids when they can be put to good use. My husband was also a 100% compliant patient,one who took charge and learned all he could about ESRD and dialysis.
Interestingly, we did not pay as much attention to his Kt/V as our home unit would have liked. Instead, we focused on how he felt and what he was able to do. During his entire time on dialysis, my husband worked more than full time, played golf 2 or 3 times a week, traveled for business and was very active in our community. We raised our son and restored an old home. A very normal life!
Over the last few years, I have been a volunteer for Renal Support Network. Through that patient led organization, I have met so many long term dialysis patients who are thriving. They are healthy, happy, and working largely because they are the type of patient that Mr. Peterson describes.
Fortunately, I was able to attend the ADC the last 2 years and this year's ASN Renal Week in Philly. At several sessions, I detected a real shift toward a more patient centered focus. And, as the commentary suggests, check out patient led organizations like RSN. (www.rsnhope.org)
Denise Eilers, RN, BSN
Does Medicare pay any more for night time or extended dialysis?
Currently, Medicare does not pay extra for extended dialysis or nocturnal dialysis, nor are incentives provided.
It is hoped they will change this policy as more evidence mounts as to its cost effectiveness. Reasons are expected to include:
We consistently hear from patients (at RSN) how hard it is for them to plan any activities after a dialysis session. They often make plans on their days off of dialysis because their treatment may make them feel “washed” out. I agree that “adequate” dialysis is a lousy goal for ESRD patients and the goal should be “optimal” dialysis. An illness is too demanding when you do not have hope.
I have heard so many stories from fellow patients that did not have an appetite or dreaded dialysis because the possibility of crashing and cramping. Once they started more frequent or longer dialysis the majority of these symptoms disappeared and their quality of life improved.
The internet has become a powerful tool/resource for people who have CKD. It allows us to share info and ask questions. Patients and family members need to become more empowered and if their treatment option is not working for them to find a solution. Patients dialyze to live, not live to dialyze.
B asks what should be the measurement for optimal dialysis. I think how one feels isn't a bad measure but we can hope that some day a meaningful blood measure can be identified. If we could determine the average lifespan of a blood cell that would be a meaningful measure.
Until a meaningful blood measure is found basing dose on how a patient feels is better than pretending urea does the job.
This is a great article Gary. This is my favorite paragraph:
To accomplish this objective, the federal government should embed a national patient organization in its policymaking. What is especially needed - immediately - is a permanently funded organization that includes these ‘high-dose/frequency’ patients. This organization could be funded similarly to the ESRD Networks or the USRDS and would be separate from any dialysis provider organization. As they will need access to the same data, it could be an independent part of these organizations. This combination would also provide patients with the ability to interact with large numbers of experts, increasing their knowledge and personal connections. Just as the physicians, nurses, and administrators have long seen the benefits of national organizations for sharing ideas, solving problems, and bringing change, so too will patients.
When I read this I imagine a think tank of sorts. Rather than hobbyists like me trying to understand the provision of dialysis we need people with a sharp end of the needle point of view who can work on this full time.
Until we can clone Lori we'll need to create this think tank.
This message was edited to add HTML functions only.This message has been edited. Last edited by: Leigh,
Gary Peterson is to be congratulated for his probing and controversial discussion document. I agree with most of his points. What is encouraging is that while the views expressed may still represent only a minority, it seems to me the minority is growing and the positions expounded are increasingly being noticed.
There is one additional major barrier that deserves discussion in the context of early access to expensive new therapies or modalities. To gain unconditional approval by funding bodies in 2009 requires satisfying the rules of strictly applied evidence based medicine (EBM), with mortality and cost effectiveness end points. In a discipline like nephrology, where there are far fewer randomized controlled clinical trials than we would like, this requirement is tantamount to either denial, or long delays before approval, for expensive new approaches.
Consider the daily hemodialysis conundrum, either at home, or in-center. There is no doubt that the existing body of evidence does not satisfy, beyond any shadow of a doubt, the rules of strictly applied EBM. However, most clinicians and patients believe, considering all the data and experience and based on the balance of probabilities, that these modalities should be more widely available than they are now. These are treatments they would want for themselves, or for their loved ones.
The dilemma is how to adjust our approach to the evaluation of evidence in a way that is specific for our data challenged discipline? How do we weigh and align our advocacy duty with our scientific role? We must address two competing priorities: allowing earlier access to promising new therapies, while simultaneously insisting that residual research questions get answered with rigor. Until these questions become part of the discussion within our community, it will remain difficult or impossible to shift the paradigm of CKD and ESRD policy making.
My two cents, happy holidays to all!!
|<Tom F. Parker, III MD>|
Responding to New View, posted by Gary Peterson, December 11, 2008
Gary Peterson awakens each morning sometime around 3AM, an hour dreaded by most nephrologists as they find themselves taking care of a really sick patient in the hospital – but only occasionally. Not every morning. He immediately, each day, begins to review hundreds of sources for the most important information to post on RenalWEB.
We must pay attention to someone who witnesses so studiously the trends of scientific articles, news pieces, and postings in blogs and other websites. His filter of information must be respected.
I am struck with his insight in this most recent posting.
He points out the mistakes, mistakes in which I participated, of how the nephrology scientific and practicing community came to accept the term “adequate” in prescribing dialysis.
I don’t believe that most of the investigators of the National Cooperative Dialysis Study, including myself, ever intended that the results and interpretation be used in such perverse manners. Kt/V, a retrospective application to the study, became the “end-all” of dialysis prescription. Prescribing and attaining a URR/Kt/V target became the surrogate for otherwise caring for the patient. New formulas appeared annually, if not semi-annually, to further define this formulaic approach to care of the dialysis patient.
And, meanwhile, patients continued to die and feel miserable. A few thinkers, including the Principle Investigator of the NCDS, Ed Lowrie, challenged the conventional wisdom of Kt/V. Others ignored it and begin to offer more and more t (time). And the outcomes have been remarkable.
Who is to blame for this original mistake? Is it the clinician who did not dissect and really understand the shortcomings of the NCDS? Is it the zealots of the Kt/V formula? Is it the payors who insisted that this was sufficient dialysis and that’s all they would reimburse? Is it the writers of guidelines? Is it the patient who insisted on shorter and shorter therapy sessions? Is it…?
How will we indeed now move beyond this archaic and outdated prescriptive and outcome process? In what other therapy does a nephrologist today tell his patient that I hope to give you adequate care rather than optimal care? Not likely, any.
Mr. Peterson tells us that the change will come from the patient. I’m not as certain. There are perverse influences that will keep the patient’s voice quiet. Unfortunately. The lack of a well funded patient community, CMS and other regulatory bodies, payors, dialysis providers inhibited by the current payment schema, and lazy nephrologists, unwilling to speak outrage for having to provide “adequate” care.
However, he does speak to the power of the patient. We have learned from the recent election about the power of the internet in communicating concern for past policy and wrongdoings. Perhaps the internet is the vehicle by which patients and others will carry the message. My personal plea is that the nephrologists will lead the way. It is they who should speak the loudest. If we are to correct the mistakes of 20 years ago, it is they who must acknowledge it and make amends.
Tom F. Parker, III MD
New Views is a well thought-out article. The formula for quality ESRD care in the United States should be a simple one, particularly since we have one payer for close to 90% of the population. That payer is responsible for managing Part A (hospital costs) and Part B (physician/drugs/outpatient costs) for ESRD care. Can that payer see the big picture?
- We know that more frequent/longer duration dialysis reduces expenditures for Medicare down the road: fewer (expensive) drugs are needed, fewer (very expensive) hospitalizations are needed (hospitalizations, by the way, that complicate the symptoms of the dialysis patient when anemia management goes unattended and patients pick up hospital-related infections along the way, leading to even longer stays); people can go back to work (more tax revenues) or re-contribute to society in their own way (increase volunteer work).
Those are all long-term benefits of improved dialysis care, and if a federally funded program can boast of those results, most taxpayers (including ESRD patients and those in the dialysis industry) would see that as a positive.
The problem is that dialysis providers don't see that benefit on their bottom line. Combining Part A and Part B payments has been discussed for years, with the idea that Part B providers share in the financial benefits when they reduce Part A costs for Medicare. If a provider agrees to spend more dollars on better care, and the results are good and save money for the payer, share the rewards.
But we've been told such a plan is too complicated. If CMS isn't willing to work in partnership with dialysis providers, both large and small, and support investment and offer incentives for better care options, little will change. And patients, caught in the middle, will continue to struggle in finding the best therapy.
We all know that at-home, short daily or nocturnal dialysis isn't for everyone. A patient needs to be motivated, persistent, patient, and be wary of burnout. BUT, those patients who want such a therapy, and can show they are capable of handling it, should have the option. One would think Medicare would want to make sure such options are offered.
Re: patient involvement. I've mentioned to a few patient organization leaders in the past that advocacy efforts overlap. We have at least six patient organizations in the United States and they all have their own agendas. And yes, much of their funding comes from the very companies they may have to ask hard questions regarding the delivery of quality care. That presents a conflict of interest.
What I've proposed is a summit for all patient groups -- a consensus conference/think tank approach -- funded by Medicare, where each group could present their capabilities and expertise. Some groups are better at patient education; others at policy development; still others at identifying research priorities or surveying/collecting data on quality patient care (i.e, monitoring the Dialysis Facility Compare Web site). Once the strengths/skills are identified, a task force is assembled with representation from each patient group. The task force develops a set of responsiblities for each patient organization based on their expertise. Thus duplication is eliminated, and the task force provides a unified voice when patient views are required. It might be similar to a Kidney Care Partners for patient organizations, and it might encourage more patient involvement. Instead of being confused as to which patient organization to join, patients can join the group that fits their interest.
Patients who receive the care should have a greater influence on how that care is delivered, particularly in a chronic care environment.This message has been edited. Last edited by: Mark Neumann,
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