The myth of the high dialysis mortality rate

By Bill Peckham

Attending a national kidney meeting, Renal Week for example, drives home that many people in the renal community believe society could be doing better for people on dialysis. How to accomplish improvement is in dispute but people from all sides of the industry agree that the current way dialysis is provided is not optimal.

One item often cited to improve is the "dialysis mortality rate". It is said that the dialysis mortality rate is lower abroad. As low as 9% in Japan. Indeed, I've written the phrase "dialysis mortality rate", unprompted, on this blog. However, I now realize that to refer to the "dialysis mortality rate" is to refer to a myth. The myth that dialysis is dangerous, is deadly. Indeed that there is a significant dialysis mortality rate. The entire verbal construct is wrong.

Dialysis is good. Dialysis is not dangerous. Too little dialysis is dangerous. It is as if standard medical practice was to give someone only half the insulin they need and then call the resulting deaths, deaths from insulin. We'd be reading about the high insulin mortality rate. No, no, no. The cause of death would be under-treated diabetes. This is the situation we face in the provision of dialysis. We have a high mortality rate from under-treated CKD5.

For a myriad of reasons a bare minimum dose of dialysis is all that is routinely available in the United States for people with CKD5. People with CKD5 face a high death rate because they do not receive a transplant or enough medicine, enough dialysis. Dialysis is medicine. Dialysis treats stage 5 CKD as surely as insulin treats diabetes.

The myth of the high dialysis mortality rate must be exposed as a misnomer, a fraud. Let us see dialysis instead for what it truly is: life saving medicine. The fight we all should engage is to ensure everyone has access to the proper dose of medicine. The proper dose of dialysis.

Comments

[Alison Hymes]

This myth is widespread. I even had an M.D. in a different specialty tell me that "most people die soon after they start dialysis". Needless to say I didn't return to this M.D. but I wonder and worry about other CKD5 patients who have the misfortune to be his patient and may be discouraged from even starting dialysis treatment and therefore die from lack of treatment.

[RNMDF]

I could not agree more, however as a dialysis nurse for 21+ years the biggest challenge I have had is convincing the patient that more is better. Almost daily at least one patient shortens their treatment for a social engagement. I can understand how difficult it must be to sit in a chair for 3-4 hours three times a week but the long term effects of reduced treatments are obvious. And dispite the global evidence of the effects of minimal treatment few physicians are recommending increasing treatment for their patients.

[Frank Prosl]

Thank your for your insight re how language distorts our understanding.

I am reminded of a conversation I had some 10 years ago with a former dialysis nurse who worked in a NYC dialysis clinics in the 1980s. It was the practice then that patients would be allowed shorter dialysis on their last session of the week if they had adhered to the prior week schedule. Of course most patients accepted this reward for good behavior.

Frank

[Kim]

Do you think pre-dialysis education would help at all, like if you were in stage 2 or 3? A full disclosure explanation of what was going to happen while on dialysis?

I know, from the other side of the needle, I have patients who come in for the first time and aren't aware of what dialysis is all about...and RNs, RDs and Social workers come in and talk to them while they are on the machine, it seems a tad counterproductive to me.

How do you feel about that?

[Andrew]

I think their are explanations for patients who would rather get off treatment early than get the proper treatment.

Education is the foremost. If all patients and caregivers understood Kidney disease and Dialysis better, things could change. There is also the financial aspects of Dialysis which make it an uphill battle to better education and longer treatment times. Longer treatment=more money.

If we were educated up front, we would have considered treatments and options very differently. What a shame. 2 1/2 years with inadequate Dialysis for no reason other than education.

My wife and I have 2 1/2 years with no transplant in site because of anti-bodies. Being in this position forced me to do better research on Dialysis and there are better solutions than 3 time a week at 4 hours per treatment. It has taken months of discussion with my wife to consider longer treatment times as a solution because of the reduced quality of life she is already living.

Mental health support is also important as it is hard to make good decisions while depressed. I have seen patients take themselves off Dialysis who clearly were depressed and had no capacity to make the decision.

So there you go, my humble opinion on why there is some under treatment and why some decisions are made by patients. I know my wife has problems with depression, I wish someone would address that as a major issue with Dialysis treatment.

[Jenny Patterson]

I would have to say the language must change on both ends of the needle (hat off to you, Bill) I know when I first went on dialysis, the was a lot of confusion and misunderstanding. Also, it was explained a LOT to me and quite often, about how I would die (I thus now own the joke) due to ______
fill in the blank with any of the standard warnings. Not the best mind set to put anyone in but I was 17 at the time. Boy, did it all look dismal for quite along time. Gee, why would a person dealing with a life-threatening illness
want to do better if all you think the outcome is going to be is more life-threatening treatment?
Also, the medical profession uses language around the unit reinforcing the idea of shorter is better.
Bill is right but on more fronts of dialysis than one would think.

[Dori]

Wow, excellent point, Bill. I had a similar thought re: the phrase "renal diet." There IS no "renal diet." There is a STANDARD IN-CENTER HD diet, which strictly limits fluids, potassium, sodium, and phosphorus in an attempt to force the dialyzor to compensate for not enough treatment. ANY other type of dialysis results in a much less limited diet. For folks doing nocturnal HD 5-6 nights/week, the diet is pretty much normal.

[Zach]

Since the "STANDARD IN-CENTER HD diet" requires 1.2 grams of protein per kilogram of body weight per day (already more than a "normal diet"), will we find out that doing nocturnal HD 5-6 nights/week will require even more protein in the diet, as well as other nutrients that are indiscriminately removed during hemodialysis?

[yin]

I'm doing 10 hours ND every other night and I feel "wash-out" in the morning. But when I started this routine seven months ago, I felt quite ok in the morning though. This is indeed an evolving condition.

I think every Dialysis user is different and "user beware" plays a critical role to successfully manage this treatment....

[kaye simon]

Hello, im from the philippines and my father has been diagnosed to have this same condition as a complication of his diabetes. right now he is still at the hospital and has undergone 4 dialysis sessions already. the cost of dialysis here in the philippines is very high. i want my father to live longer but i might not be able to sustain his dialysis. i would do anything to save him. what should i do?