April 30, 2009 - RenalWEB's 2009 Boston ESRD Conference Summary contains personal observations and impressions formed at the April 23-26, 2009 conference “ESRD: State of the Art and Charting the Challenges for the Future” which was held in Boston and was sponsored by the Harvard Medical School Department of Continuing Education.

Dialysis professionals and patients are invited to share their ideas, questions, experiences, thoughts, and constructive criticisms on the issues raised in the article. Click on the "Reply" button.

(The article had minor additions and a final edit on May 2nd.)

This message has been edited. Last edited by: Leigh,

Once again, Gary Peterson has penned a succinct and thoughtful summary of the state of dialysis today. Hopefully, the Boston conference will spawn a whole new way of thinking in the future. It is certainly needed and long overdue. I would like to comment about certain parts of the summation.

I am not surprised that so much "white hair" attended the conference. Those who have been part of the kidney community for many years are wise enough to realize that despite some improvements, there has been remarkably stubborn adherence to the status quo. "Because we have always done it that way" is simply not tolerable any longer. Government/Medicare shares in the blame.

Dialysis may be life saving, but saved for what kind of life? Non biochemical factors make up more than half the overall picture? No surprise there! My late husband (HHD 1980-2004) would often say "I know how I feel. I need more dialysis. Let's go 5 or 5 1/2 hours tonight." He didn't need to know his Kt/V. Why not let patients define some of their own QoL markers? In my husband's case, QoL meant the ability to play golf, work full time and play with our son. No two people are alike. Why should dialysis be "one size fits all?"

For patients like my husband, more dialysis=better quality of life=longer life. Period! End of story!

The personal touches in the physician-patient relationship can be so easily lost in the frenzied quest for scientific data. Continue the studies,of course, but talk--and REALLY listen--to the patients. My husband's nephrologist did all the right medical things (i.e. labs, exam,...) but would also ask about his golf game, work and family. He was not afraid to share some of himself with us either. Not so surprisingly, my husband actually enjoyed those appointments.

Patients cannot become partners in their care if they don't have a place at the table. I can't think of any disease where it is so imperative that patients and care partners be included every step of the way. I wonder if any nephrologist has ever asked to visit a home patient during treatment--just to see what it is really like?

Because of my husband's history and my nursing background, if I needed dialysis, I would most certainly choose daily or nocturnal. Those options were not available in 1980, but my husband beat the odds anyway. How? Longer treatments, extra treatments, education, adherence and trust in physicians who treated him as an equal and valued to his opinions.

The essence of our humanity, our caring for one another, does not have to be abandoned in the pursuit of science.

Denise Eilers

As one of the Boston ESRD conference organizers, I wish to offer a brief response to Gary Peterson’s recent personal summary of the meeting. The observations that I offer do not necessarily reflect the view of the other organizers, Steering Committee or host institutions.

I certainly hope that Gary is correct that the conference will have the legs that he suggests it might indeed have. Toward that goal, there will be presentations at the WCN, publication of the proceedings in CJASN, and discussions are ongoing for presentations at the ASN, RPA and NKF meetings. In addition, letters will be sent to KCP and CMS – providing a summary of the conclusions and recommendations.

I concur with Gary about the over-reliance, even misapplication, even misunderstanding, concerning Kt/V. If we are going to have a formulaic approach to quantifying the prescription and outcome measurement of dialysis, at the very least, the formulae should be sufficiently robust with background science to warrant their use. It should more rigorously acknowledge the effects of the emerging therapies and the clinical improvements, perhaps with greater emphasis on T.

There will be much more said about this in the future, but if we were to rid our facilities of catheters and protect the left ventricle, just these two, as Gary suggests, we would save tens of thousands of lives yearly. This is clear. We don’t need further studies. This will be ongoing emphasis from the conference.

Gary is incorrect in his assumption concerning anemia and ESAs. The companies offering financial support had no input into the program. The program was established prior to soliciting financial support. In fact, one obvious omission from those offering financial support, a company that has had a high profile in ESRD therapy, refused to support the meeting unless they were given a seat at the planning table and this was refused by the Steering Committee. It was shown in the conference that there is less ESA usage with the emerging longer and more frequent therapies. Given the numerous studies recently, I would have to ask Gary what he has in mind when he suggests that more mention of them was warranted.

Allow me to jump to Gary’s conclusion, attempting to keep this response as short as possible. The outcomes are indeed miserable, we clearly can do better, much better, and we are on the precipice of doing so. However, we must understand how we got here. Back in the days of inadequate science, the early 70s, Medicare decided to reimburse for dialysis and transplantation. The model that ensued was built upon the reimburse process not the science. Moreover, clearly the reimbursement process has not evolved with the science. Currently, we cannot give the kind of care that needs to be given, given the “one size fits all” payment system. This must change. I am speaking more to reimbursement for dialysis. Certainly we can fix the catheter issue without a change in reimbursement, but we cannot fix cardiovascular and LV disease, unless we give much more and frequent dialysis.

We now know the outcomes and are dissatisfied. We now have the science and techniques to make the changes. We need the voices to be louder for change. We need the nephrologists to take the leadership in expressing dissatisfaction. The providers must join forces and insist upon being paid for providing better, more frequent, and longer dialysis.

The time is now.

Our current formulaic approach to quantifying dialysis care needs to be seen for what it is.

It is inhumane and immoral to keep patients feeling chronically poisoned or drugged.

When a drug is tested and evaluated for approval, its effects on the whole patient are assessed. If it resulted in widespread fatigue and depression, it would be removed from the market.

Why haven't we done that with the dialysis dose? If Kt/V was seen as a prescribed drug, its use would have been stopped long ago.

To me, Kt/V represents a kind of soul-less and minimalist practice of medicine. Kt/V is and always will be linked to a "death and/or hospitalization" approach to patient care. Those are the sole outcomes it targets. It does not acknowledge the patients' quality of life or the purposes of their lives. It treats patients like lab rats.

Kt/V allowed nephrologists to claim a "gold-standard" of treatment while not even talking to the patients. Yet I know of no nephrologist who would accept three-times-a-week hemodialysis with a Kt/V of 1.2 for themselves.

Why does it continue? Why do we treat others in a way that we would not want to be treated?

Competition and profit are powerful forces that can do much good. As we are seeing, they can also do much harm. For-profit corporations have their time and place in medicine, but they can also change to become counterproductive and actually harm patients.

Since 1983, Medicare has controlled ESRD Part B costs with a composite rate system that is not tied to patient outcomes and often leads to higher Part A costs. With this model of care, we have corporations making billions of dollars in profit by providing dialysis patients with minimal treatments. As in the case of overuse of ESAs, the corporate and personal economic pressures that can drive medical decision-making are obvious.

How many lives has this cost? There has been no improvement in dialysis patient mortality in twenty years? What will the history books say? Will the word “genocide” be used?

I don’t think the nephrology field is willing to openly and honestly discuss all this quite yet. And I don’t think the lawyers will let us have our own version of a Truth and Reconciliation Commission.

This message has been edited. Last edited by: Gary Peterson,

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