You have the right to know your options

By Bill Peckham

In the Gotch interview he says he'd like to try short daily dialysis and see "how well I did on it and whether it’d be worth it". I think that is a smart strategy, all dialysis is not equal, investigate your options and find the dialysis that allows you to feel best. That's the theory. In practice few people choose their dialysis modality. Many don't know there are alternatives to conventional incenter dialysis

The new Conditions for Coverage (large PDF file) went into effect in October 2008. The CfCs ‘‘Patients’ rights’’ condition at § 494.70(a)(7):

requires that the patient or his or her representative be informed of patient rights, including information about treatment modalities and settings. Patients must decide what is in their best interest and they should have the flexibility to include family members in their decisions regarding dialysis modalities as they see fit. Patients are periodically reassessed, as required under the condition for patient assessment at § 494.80(d). The patient’s suitability for various dialysis modalities and/or transplantation are assessed by the interdisciplinary team, which may include the patient if desired, and reviewed with the patient each year.

This means Donna's provider has to inform her of her right to all other dialysis modalities, even if her provider only offers conventional incenter dialysis. This modality information must be presented at both the initiation of dialysis, when people are least able to process information, and as part of the yearly care plan review. Each year patients must be told that it is not too late to dialyze more.

The hope is that this requirement will increase demand for high doses of dialysis and that this demand will  increase the high dose dialysis supply. That's the theory.

Comments

[John Agar]

Bill ... thank you for your website and all the useful information you put up here. Though I try as best I can to refrain from putting my oar in too often, I just had to write this ... there are times when you just have to given in to the urge and say what you want to say!

Here goes ...

It continues to frustrate, bemuse and depress me as I read here and elsewhere (on the HDC patient message-boards in particular) of the pleas from patients to those who I believe SHOULD know better ... to stop the continuing arguments over the unarguable ... and to do something concrete, tangible, sensible and practical (and to do it fast) to improve the delivery of dialysis for the hundreds of thousands of underdialysed, under treated patients that form our facilty-based clientelle and for whom we have a responsibility to 'do our best'.

Sadly, though, we do much less than our best. I feel a personal responsibility to continue to try to change this sorry state of affairs.

I feel driven to continue to stress this simple fact ...

* that dialysis dose as measured by urea clearance is simply not the answer

* that the true meaning of dose is amount (time x frequency) and that the rest follows

* that there is nothing more tricky to it, nothing more complex, than a very simple, easy to remember phrase ... 'good dialysis is more dialysis'

When we take a medicine (eg: a drug like an antibiotic), we talk of the dose of the drug being a simple multiplication of (1) the amount (eg: mgs) of the drug being taken x (2) the frequency (how often) it is taken. 500mg twice times a day is 1/2 the dose of 1000mg twice times a day but 1/6th the dose of 2000mg three times a day. That's kind of simple, isnt it?

Dialysis is no different. To pretend otherwise is to make the whole problem far more complicated than it needs to be.

More dialysis = more dose, almost regardless of the blood flow rate, the dialysate flow rate, the membrane size, type or shape etc etc etc

Now, I grant you, it IS true that some small solutes (like urea) are removed faster at the start of dialysis than at the end (as the concentration gradient diminishes and thus the speed of removal slows) ... but ...

(1) this is not true of all solutes (eg: phosphate)

(2) this simply smoke-screens the salient truth that 'more is good and less is bad'. Though it can be used for an argument to support short and frequent (short daily) over conventional dialysis, it also follows that long and frequent ought to be (and is) best of all.

It makes me so sad to have to keep posing this question ... but, like the song says ...

'When will they ever learn - when will they ever learn'.

John Agar