Dr. Carl Kjellstrand/AKF

I am so happy that HDC has posted in their update that the American Kidney Fund is to bestow its highest honor on Dr. Carl Kjellstrand. I will never forget when I read one of his “statements” so early on in my dialysis career. Below is what was read and to me at least it was very profound.
That’s not to mention what the AKF did for my spouse and me at one of the lowest points in our lives. The AKF is a great resource.
Below is something that I find very influential and moving when “debating” home dialysis at the time. He made a difference.

Dr. Carl Kjellstrand

DIALYSIS IN THE USA

In recent medical studies, it has come to light that people receiving
dialysis treatment for kidney failure in Europe experience, on average,
better health with fewer complications and longer life expectancy than do
their American counterparts. There are a number of possible reasons for this
discrepancy, such as differences in patient populations and in treatment
procedures, but the most significant seems to be the difference in the
respective goals of treatment.
In Europe, the goal of dialysis is rehabilitation. Patients are expected
to do well and to return to normal lives, and their doctors are not satisfied
until they do. In the United States, however, the goal often seems to be
merely to keep patients alive, without any serious ongoing attention to
rehabilitation or quality of life. Might this great difference in intentions
and expectations be the deciding factor in the difference in outcomes?
Bernie Seigel, M.D., Deepak Chopra, M.D., and others, have written about
the influence that expectations of doctors and medical staff have on patient
outcomes. Their thesis is that since patients tend to conform with their
doctor’s expectations, performing up to, or down to, those expectations, it
is a doctor’s solemn responsibility to convey as positive and hopeful an
outlook as possible to assure the most beneficial outcome. A recent study in
Clinical Psychology Review on the ‘placebo syndrome’ clearly shows that
belief in a particular outcome can be as strong a determinant as any
medication. Indeed, is it really any surprise that low expectations lead to
less than optimal outcomes?
Dialysis in the USA has become by default a kind of limbo, and the
experience of patients, while fraught with difficulty, is rarely allowed full
expression or resolution. Instead, patients are expected to be ‘nice’ while
being treated as little more than items on an assembly line. The prevailing
attitude of doctors and staff at many clinics is that of denial: that the
situation is so bad that it must not be dealt with. The corporate owners,
usually far removed from the clinics, tend to make treatment decisions based
on short-term profitability, often to the short-term and long-term detriment
of their customers well-being. Although patients become inured to the idea
of having to dialyze, and would be more than happy to get on with worthwhile
lives, they are held back by a system that regards them as permanent invalids
with one foot in the grave.
It seems that aversion to the idea of dialysis is the stumbling block
preventing further investigation of solutions to dialysis-related problems.
The common perception is that dialysis is an awful burden which it is
impossible to do anything about. Great pains are taken to impose this view
on the patients, with regular negative reinforcement: in combination with
the treatment, it is an effective form of brainwashing. This defeatism
inevitably colors treatment decisions, and leads to a poorer quality of life
for all concerned.
I don’t think that kind of mentality is appropriate in any medical
situation. There may be no cure per se for kidney failure, nor is there a
cure for blindness, amputation, paralysis, or brain damage. However, the
general trend in all these other cases is to overcome the disability and
return the person to a full and worthwhile life, regardless of the obstacles.
What makes dialysis so different? Is it the machine? Is it the blood?
What is it? I think it is a self-fulfilling prophecy.
The time is overdue to re-examine our priorities and re-establish the
dialysis program on a solid basis of the optimization of the quality of life
of each individual dialysis patient. When that becomes the standard of care,
we will also see the optimization of outcomes: patient satisfaction,
rehabilitation, and longer, healthier, more productive lives. That is what
the system was intended to produce, and that is what we are paying for.
Let’s do what it takes to make it so.

April 15, 1994

Hi John, I had forgotten about that article thanks for posting it .

Hey, John, I never saw that article, and I, too, thank you for posting it. Dr. Kjellstrand has been the best sort of passionate patient advocate–an MD, PhD (think major, impeccable scientific credentials)–who pulls no punches when he talks about how things should be for patients. He’s another one of my personal heros, and I count myself very fortunate to have so many in this field. :smiley:

I was particularly struck by this quote:

In the United States, however, the goal often seems to be merely to keep patients alive, without any serious ongoing attention to rehabilitation or quality of life.

Sad but true. Medicare began funding dialysis in 1973 because it would supposedly rehabilitate patients, who would otherwise work and pay taxes if only they could get the treatment they needed to stay alive. While testifying to Congress on behalf of the Medicare ESRD Program, Sen. Hartke claimed:

As Senator Hartke testified at the time, “Sixty percent of those on dialysis can return to work but require retraining, and most of the remaining 40% require no retraining whatsoever. These are people who can be active and productive, but only if they have the life-saving treatment they need so badly.”

Unfortunately, IMHO, the U.S. renal community has gotten off target, focusing so heavily on “objective, clinical” data that they’ve forgotten the real purpose of dialysis–which is to return people to active and productive lives. Instead, all of our quality improvement efforts are focused on blood–measuring blood chemistries, checking blood pressure, improving access to the blood. And this is important, but it’s not everything.

Dr. Kjellstrand wrote his classic piece on the unphysiology of thrice-weekly in-center hemo more than 30 years ago in 1975, and we’re just now starting to catch on to how very right he was. (You can read a summary of this article at: http://www.homedialysis.org/v1/research/articles/20050617.shtml). As he noted:

the more “unphysiologic” dialysis is, and the more abnormal chemistries and fluid levels are before dialysis, the more violently they will change during dialysis and the more ill-effects that patients will experience.
.
Time–and the spread of more physiologic dialysis treatments that he helped to develop–is proving Dr. Kjellstrand right, and patients all over the U.S. and around the world are benefitting from his commitment and willingness to speak his mind.

That was what struck me, his willingness to straight talk and pull no punches.

Also I do remember reading Senator Hartke: “Sixty percent of those on dialysis can return to work but require retraining, and most of the remaining 40% require no retraining whatsoever. These are people who can be active and productive, but only if they have the life-saving treatment they need so badly.” during my research for Poignant Moments… and although I didn’t use that quote, I used much of his thoughts in my Intoduction.

“In what must be the most tragic irony of the 20th century, people are dying because they cannot get access to proper medical care. We have learned how to treat or to cure some of the diseases (that) have plagued mankind for centuries, yet those treatments are not available because of their cost. Mr. President, we can begin to get our priorities straight by undertaking a national effort to bring kidney disease treatment within reach of all those in need.” -Senator Vance Hartke (D-Ind.) on the passing of Public Law 92-601 (1973)

I sometimes wonder, when I give talks to dialysis patient crowds, why they don’t understand that more is better. Many look at me with crossed eyes, as if to say “You want me to stay on that damn machine more?”

At least there was one person I met, who was one of the origninals in my state of Massachusetts more than 30 years ago, doing home hemo. She is now 80 something but she knew exactly what I was talking about. A lovely woman who was fascinating to talk with.

Why aren’t more centers promoting this?

Yes, I know and I think we all know the answer to that.

By the way I was talking with Prof. John Agar the othe other day (by email) and he will be in the United States and Canada for about 5 months soon trying to shake up the system with some lectures with Dr. Blagg this coming spring and summer. We can all learn from these two also.

More from Dr. Kjellstrand. Is he on the board for Aksys? He certainly thinks/speaks outside the box. Wonder how many other nephrologists espouse his philosophy of quality dialysis patient care? Seems like we need a united group of patients and professionals if these speeches are going to do more than fly in the wind…

Dr. Carl Kjellstrand
Recipient of the Annual Award for Lifetime Achievements in Hemodialysis
keynote address

The artificial kidney should try to mimic normal renal function as much as possible. The main function of the kidneys is the even maintenance of the internal milieu, homeostasis, not only the removal of urea. We should strive to maintain normal electrolyte and acid-base balance and normal fluid volumes in the body. This is achieved with long, daily, smooth dialysis. The removal of urea is one, and not the most important, of many kidney functions, yet we dialyze as if the only renal function was urea removal.

Chronic hemodialysis in the USA has been a quantitative triumph and a qualitative failure. From a handful of people being dialyzed at the end of the 1960s, an enormous organization has been built up that accepts over 100,000 patients annually — 1 every 5 minutes — and cares for over a quarter of a million people. It is an impressive story, and one should be proud to have participated in it.

The success of chronic hemodialysis as measured in survival, morbidity, and quality of life, is another, sadder story. Data from the early European Dialysis Transplant Association (EDTA) Registry indicated that the 1-year crude mortality rate fell from about 50% in the 1960s to 10% in the early 1970s. The US National Dialysis Triangle Registry reported a cumulative 1-year mortality in 1970 of only 10%. Since that time mortality almost tripled to 25% in 1990, and has since shown a modest decline to about 23%. It is better to develop cancer of the breast or prostate than to need chronic dialysis in the USA in the year 2000! The increasing death rate is unprecedented. In all other diseases employing high technology medicine, such as coronary bypass, HIV, hypertension, and diabetes, mortality rates have improved. One explanation for the rising mortality in the USA has been that older patients with more comorbidity and worse diagnoses are accepted. The same is true for Japan, second to the USA in accepting patients for dialysis, but their mortality rate, which bottomed out at 9%, has only recently risen to 10%. All other high technology treatments are also accepting older and sicker patients, such as those with dia-betes; still, the results have improved. Dialysis is unique in experiencing a wors-ening mortality. I believe the major reason for the miserable results of chronic dialysis is that we dialyze in an increasingly unphysiologic fashion.

If one considers the reasons for these awful statistics in the USA, they can be divided into patient problems that limit survival and problems with the hemodialysis procedure that should be improved. Advanced age and many comorbid conditions limit survival, but when the patient comes for dialysis, we can do nothing about these. With hemodialysis there are four areas where improvement can be achieved: higher small molecular removal (higher Kt/V), more-physiologic dialysis, better middle molecule removal, and better biocompatibility. The best clinical studies indicate that the last two are of lesser importance, and that more-physiological dialysis is the best way to improve mortality. A higher Kt/V is the second most important factor.

Dialysis has become increasingly unphysiologic. The early hemodialyses were long affairs, 8 –12 hours. In the USA, because of commercial pressures, and in other countries because of budget constraints, dialysis was increasingly shortened to the current 2 1/2 – 3 1/2 hours, only one fourth as long. Because of the preoccupation with dose (Kt/V), it was erroneously assumed that as long as the result of the numerator, K x t, was maintained, all was well. This assumption is wrong. A greater K cannot compensate a short t. A long t is necessary for fluid and sodium removal, and thus, blood-pressure control. Short, ultrafast dialysis can never maintain the homeostasis necessary for extended survival and decreased morbidity. In Japan, as in the USA, short dialysis is dangerous. Overall, Japanese patients have only one third the risk of dying in a given time period compared to USA patients; however, the Japanese patients who dialyze as short and fast as USA patients, have the same awful death rate as in the USA. In the Tassin, France, clinic with the world’s best survival, patients are still dialyzed 8 hours. Practically none of the patients is on medications for high blood pressure, compared to some 70% of all USA hemodialysis patients. Homeostasis cannot be maintained with short, fast dialysis. Just as speed on the road kills, so it does in hemodialysis.

Short, fast dialysis also started a vicious cycle. Short, fast dialysis leads to more troubles than long, slow dialysis. Patients experience cramps, nausea, vomiting, headaches, and fatigue. Patients then naturally demand shorter and shorter dialysis so as not to have this misery prolonged. It will be necessary to explain to them that this short and fast dialysis is very dangerous to their survival, and longer, gentler dialysis will eliminate these symptoms. Patients also benefit from higher Kt/V dialysis than is now given. The Dialysis Outcomes Quality Initiative (DOQI) guidelines of a Kt/V of 1.2 – 1.3, three times per week, is far from optimal. Data from Park and Keshaviah and from the Japanese dialysis registry show continued survival improvement until a Kt/V of 1.6, and the healthiest dialysis patients are those on long nocturnal dialysis with weekly Kt/V of up to 12! These patients need neither blood pressure medications nor phosphate binders, and no or much less erythropoietin. Most of these expensive medications with unpleasant side effects are required due to infrequent and insufficient hemodialysis. Most of the complicated dialysis equipment with “sodium ramping or profiling” and hematocrit monitoring to avoid shock are necessary only because of dangerous fast dialysis. This is absurd!

It was clear in the first 2 years of chronic hemodialysis that increasing the frequency of dialysis was very important. Dialysis for vital indications and once or twice weekly dialysis were quickly abandoned for three-times weekly dialysis, but the logical conclusion of daily hemodialysis as the best dialysis was not drawn. The logistical pressures of a great increase in the number of patients, budgetary constraints, and profit motives were the reasons for this. However, since the early days of chronic dialysis, there have always been pioneers, trailblazers, and heroes of dialysis who have not been satisfied with the poor results of chronic hemodialysis as generally practiced. Since that time, close to 100 articles and abstracts dealing with daily hemodialysis, from over 30 clinics and including observations of over 250 patients, have uniformly showed improvement in hematology, blood pressure, nutrition, hormone levels, phosphate control, problems during and between dialysis, quality of life, hospitalizations, and rehabilitation.

The world’s best long-term survivals are those achieved in Tassin, France, with very long, slow dialysis, and with an average Kt/V of 1.79. A young patient in Tassin has only one fourth the risk of dying during the first 10 years of dialysis, compared to a young dialysis patient in the USA. The result for older dialysis patients, particularly vulnerable to the many side effects of short, hypereffective dialysis is even more astounding. A 65-year-old dialysis patient in the USA has a mortality risk 12 times greater than a 65-year-old patient in Tassin. The preliminary data from long, nightly dialysis, the most effective and physiological dialysis, show even better survival. The very preliminary survival results of shorter, daily hemodialysis appear to be equal to those in Tassin.

Considering the aggregate of all these data, it is clear that we are not giving our patients the best dialysis. Why should we be satisfied with three dialyses per week when each added dialysis leads to improvement? We do not treat hypertension every other day. We do not stop insulin on diabetic patients on the weekends; yet we dialyze, and therefore, treat the hypertension of dialysis patients only every other day, and we let patients go without dialysis for 3 days over the weekend, when many develop life threatening fluid overload and hyperkalemia. Dr. Teschan pointed out in the 1950s that one should treat these conditions in patients with acute renal failure before they became life threatening. The result of low efficiency CAPD, the most physiologic dialysis form, teaches the same. Frequent, long, smooth dialysis is the best dialysis, but our standard is infrequent, fast, and insufficient.

It is self evident that daily dialysis, and particularly long nightly dialysis, should be the standard rather than the exception. Absurdly, there are bureaucratic and payment obstacles in the way of giving the very best dialysis: payment for any dialysis sessions over 3-per week has to be justified. It should be the other way around. If we do not dialyze our patients daily, some explanation needs to be given for the substandard care provided them. While we should be proud of the fact that the USA has led the way in liberal and humane acceptance of dialysis patients — we have truly been the Statue of Liberty to them — we must now also strive to achieve the best survival.

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Hi y’all,

Jane wrote:

More from Dr. Kjellstrand. Is he on the board for Aksys? He certainly thinks/speaks outside the box. Wonder how many other nephrologists espouse his philosophy of quality dialysis patient care?

Fortunately, there is an international group of nephrologists who have been speaking out on behalf of improved dialysis care. They’re called the International Society for Hemodialysis, and they include many of the thought leaders in dialysis, including Dr. Kjellstrand, Dr. Twardowski, Dr. Ing, Dr. Chan, Dr. Blagg, Dr. Agar, Dr. Lockridge, Dr. Ting, and many others. We collaborate with them to do the “Innovative Papers” part of this site.

Thanks so much for sharing this talk; I hadn’t seen it before, and wish we could make it required reading for anyone in dialysis!

plugger

Joined: 11 Jan 2003
Posts: 166

Posted: Sat Mar 11, 2006 6:18 pm Post subject: Dr. Belding Scribner


Another person’s opinion I valued was Dr. Belding Scribner - the inventor of the Scribner Shunt (an access that helped start dialysis on the scale it is today). It looks like he predicted the problems with for-profit medicine before they happened:

“When Medicare began covering chronic dialysis in 1972, for-profit institutions sprung up to offer the treatment. Scribner turned down positions with these organizations, remembers Young. “Scribner took on the for-profits because he was first and foremost the patient’s advocate,” says Young. “He really loathed all of what he considered to be the abuse of the technology to make a big profit.” Scribner also became an advocate for more convenient and less costly home dialysis treatments, which he helped develop when a 16-year-old girl was rejected by the advisory committee. “
http://mednews.stanford.edu/stanmed/2003fa...d-memorial.html

“Scribner, who retired in 1990, created the first community dialysis unit, the Seattle Artificial Kidney Center, at Seattle’s Swedish Hospital and was an advocate of non-profit dialysis centers.
“Although Belding Scribner is internationally renowned for his innovative clinical research, his motivation came from his role as a physician caring for patients,” said Paul Ramsey, vice president for medical affairs and dean of the UW School of Medicine. “Countless people are alive today because of his pioneering innovation.”
http://www.washington.edu/alumni/columns/s...s_scribner.html

““Kidney dialysis today has become predominantly a for-profit business,” said Joyce Jackson, current director of the Northwest Kidney Center. Watching the profit motive take over health care had been tremendously distressing to Dr. Scribner, Jackson said, and up until his last days he remained active in trying to expand public access to this life-saving treatment.
“The desire for profit in medicine and the desire by medical researchers to capture intellectual property disturbed him,” agreed Larson.”
http://seattlepi.nwsource.com/local/127718...scribner21.html

The links may have expired, but they are were I got the above quotes.

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Joined: 11 Jan 2003
Posts: 166

Posted: Sat Mar 11, 2006 6:24 pm Post subject: Dr. Robert Lockridge


Then there is Dr. Robert Lockridge in Lynchburg Virginia; he and his staff seem to be running a clinic the way it ought to be: testimonies and videos - http://www.lynchburgnephrology.com/index.php?pmenu=NHHD&header=NHHD&info=/index.php&tmenu=Left

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plugger

Joined: 11 Jan 2003
Posts: 166

Posted: Sat Mar 11, 2006 6:50 pm Post subject: Less inspiring


To back up what some of what the doctors above have to say there are the stats I’ve read:

*Limitations of Prevailing Treatment Methods Hemodialysis:
Outpatient hemodialysis has produced relatively poor clinical outcomes, high total treatment costs and low quality of life for dialysis patients. These clinical outcomes are reflected in the mortality rates of dialysis patients which, according to the USRDS, in 2000 were 24.0% in the United States as compared to 11.0% in France and 9.7% in Japan. Although mortality rates are influenced by many factors, including the relative risk of death determined by considering age, overall health and other variables, a study published in 1994 indicates that, even after adjusting for relative risk of death, the mortality rate in the United States was twice that of Japan. While the exact cause of this difference in mortality rates has not been established, the USRDS has determined that mortality in patients is highly correlated to the dose of dialysis delivered to patients. In general, the dose of dialysis depends on the performance of the artificial kidney, patient size and the duration of treatment.

*http://www.aksys.com/therapy/esrd.asp

*Annual mortality rates per 1,000 patient years at risk: hemodialysis patients

Year: 2001 2002 2003
23.96% 23.89% 23.78%

*page 525 of the 2005 ADR table H.12

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