Low expectations

Dr Agar, I know you travel the world and get the opportunity to speak with nephrologists from all over, especially with those here in the US. Do you ever get the impression that in general, they have such low expectations for their patients on dialysis that they don’t even bother to consider a true return to something resembling "good health? Recently, I’ve read posts from a couple of different people (who are caregivers) that say (and I paraphrase), “Well of course your spouse feels lousy; s/he’s on dialysis, so what do you expect?”

How do you define “reasonable expectations” for dialysis patients? If I follow your advice and fight for, say, nocturnal home hemo, and my neph signs off on this (which I think he will), what is the best I can expect? And what do you think that most nephs would expect would be my outcome?

A hard question to answer … again!

‘Reasonable expectations’ … well, to be honest, that varies with each and every patient. Some are old and have multiple co-morbidities (which is ‘medical speak’ for lots of other things wrong with them). Some are long-weighed-down by the vagaries of life - beyond and above their CKD and dialysis alone. Others - whether old or young - are, thankfully, more vibrant, and are less battered by life, circumstance and disease. Some ache for better, some slip easily into minimalist shoes and seek (nor, to be truthful, want) anything more. Some embrace all we can suggest and provide, yet still seek more. Others refuse point blank to be led, cajoled or persuaded to anything, and refuse ‘interference’. While you may think this cannot be so, it is. We humans are a complex lot and what is a reasonable expectation - no, a fervent goal - for some, is anathema to others. Attempts at help and encouragement can be seen, by some as interference and proscriptivity.

So … what I guess I am trying to say there is that each patient is impacted by their CKD and/or their dialysis, and/or their other ‘co-morbidities’, in different ways and with unique lifestyle implications.

A ‘reasonable expectation’ must be … has to be … the very best that can be delivered to and for each individual patient, according to that individual patient’s capabilities and potential. Oh, but that is a waffly statement … I know it is … but the spread of potential, possible outcomes is so huge that it is impossible to be more specific.

I try (and I do not always succeed as well as I might - or put in the hours needed to achieve the outcome I should or could for each patient) … but I do try to work with a patient to understand their individual goal(s) and then work towards them. It might be to run a marathon, or return to full or part-time employment, or it may be simply to walk each day to the back porch and sit in the sun. As goals vary, so too do reasonable expectations.

So, a definition for a reasonable expectation is to achieve a level of rehabilitation - a key word - that achieves at least as much as the patient wants - or thinks he/she can achieve … and then a little more. And, after that ‘little more’ … a little more again.

But, I also know that many will not get ‘there’ … will be beaten by the constant ‘two steps forward and one step back’ effort of living with dialysis. It is a battle. It is a battle that must be tempered by compassion and reinforced by understanding (and good humor wherever possible) - and I hope most of us try to get that right, more often than not.

As I think I have discerned, you know (clearly) what you want, and you plan to get it … and that is health and well-being to the max you can achieve. Good - and I wish it were always so … but it is not. Would that there were more MooseMums!

Sadly, many would (still) simply send you to a facility - few (or no) questions asked - for 3 x weekly short hour, horrid dialysis. I find that sad. Fortunately, I know many dialysis docs in the US and elsewhere who do not believe that to be the right course. The US has many wonderful, caring and compassionate nephrologists who work their butts off to change a system bogged in inertia. But … we ain’t perfect either. No-one is.

Here in Australia, we do try to ‘sell’ the ‘home-is-best’ model first and foremost. Our regular education days do not feature talks and exposure to facility patients, but to home patients. Our home patients are our best advocates … and they like to advocate … and we like them doing so! Facilities are for those who go home but then fail (and here that is only a few), or for those who, for one or more reasons, can’t ‘do’ home care. Nationally, well over a 3rd of all our dialysis patients dialyse in the home. But, that still says that the majority are not. It is impractical to get every dialysis patient home. As our dialysis population ages and has ever-more co-morbidity, that impracticality increases. But, for those who can, they should. Both PD and HD. And we must facilitate that transition to home, in any way we can.

As for an expectation that a dialysis patient must feel ‘lousy’ … while co-morbidity may lead to that (and that’s sad but true), dialysis itself should not!

Good dialysis should be restorative. It is restorative if it is applied in such a way that it is as unobtrusive to lifestyle as possible. It is most unobtrusive if it is done at a time when the patient doesn’t want to be doing something else (eg: while sleeping). It should be delivered gently … and that means slowly … and slowly means time … and time means at night. And it should be administer as often as is tolerable - remembering that tolerance varies, patient to patient.

Is that possible for all patients … of course not. But for those who can … the one obstacle that should never stand in the way is their nephrologist.

The idea of dialysis being restorative…that’s a new concept to me. I had never thought of it in that way, but it is a valid goal. And yes, it is a battle in every sense of the word, but in thinking about it, if it is possible for a patient to view dialysis as being “restorative”, that’s a powerful weapon to have in one’s arsenal.

Restorative vs Perpetuating

There is not much left to add here except to note a difference between extended hour and frequency dialysis (6 x 8 hr overnight)and conventional dialysis regimens of 3 x 4 hr (and < 4 hrs is even worse).

The difference between the two is a difference that is too infrequently appreciated or talked about … the effective ‘restoration’ vs the ‘perpetuation’ of a base-line eGFR.

Conventional dialysis usually commences at an eGFR of +/- 8-10 ml/min. Incidentally, the IDEAL trial here in Australia (NEJM 2010) - the only trial ever to try to examine the difference betwen early start dialysis (eGFR 10-12) and late start dialysis (eGFR 5-7) … the name IDEAL stands for Intitiation of Dialysis Early or Late) … actually showed no benefit from an early start.

The point of this reply is to alert you to the fact that conventional dialysis, at best, simply perpetuates advanced, severe CKD5.

Conventional dialysis does not restore any ‘renal’ function … it simply sustains the effective eGFR at no more than 12-13 ml/min … ongoing … into the sunset. This equates to the eGFR of advanced, severe CKD5.

Again … conventonal dialysis (in-facility care as currently provided 99% of all HD patients in the US) does not restore ‘function’, it perpetuates mal-function. It perpetuates effective renal function at a subsistance level at or about the accepted eGFR trigger-level that signals the need to start or consider dialysis.

Conventional dialysis thus does not restore renal function. It maintains it - or ‘perpetuates’ it - at severe CKD5 … no more!

Increasing the frequency and/or duration of dialysis actually ‘value-adds’ to that subsistance eGFR.

The more hours that are given and the more often those hours are administered, the better the effective restoration of clearance - fluid and solute - that results from the dialysis.

Clearly, the more hours given and more often they are administered, the more intrusive into lifestyle the dialysis becomes. This is why, when it was realised that dialysis could be done safely at night and during sleep, the concept of nocturnal rather than daytime dialysis arose. Dialysis could be given for longer and could be given more often if it was administered during our ‘down time’ … ie: during sleep.

Andreas Pierratos - the father of modern nocturnal dialysis … though he would correct me on this and humbly defer to Robert Uldall for that honour … once published a scale of effective function associated with each incremental increase in time and frequency. Conventional (as-it-is-done-now) dialysis (3 x 4 hr) delivered no more than eGFR 12-13 ml/min, NHHD (6 x 8 hr) @ a dialysate flow rate of 100 ml/min equating to eGFRs of 25 ml/min and NHHD @ a dialysate flow rate of 300 ml/min equating to eGFR > 40 ml/min.

And, note, in the US, dialysis is commonly significantly less than 4 hrs in duration, making the effective sustained eGFR even less than 12-13 ml/min.

Frankly, I know what I would choose.

This is what I mean when I use the dialysis descriptor ‘restorative’. The word ‘perpetuating’ better describes conventional dialysis. I rest my case.

Dr. Agar, today (the 28th, which it is still here in the US) is my birthday, and my husband took me out to dinner. Much of our mealtime conversation centered around this topic, this concept of “restorative” dialysis. Earlier in the day, I found myself once again overrun by dialysis demons, so the day didn’t start well but did end on a better note as I spoke about your idea of “restorative” dialysis. I went on to explain to him that restorative dialysis was possible only if it was optimal dialysis and was therefore not possible in the standard inclinic setting. I clarified, and he understood, that the usual dialysis treatment offered in US clinics did nothing to restore health but served only to prolong life and disability. So I understand exactly the difference between restorative dialysis and “perpetuating” dialysis, and I appreciate you putting these ideas on the web so that others may see them.

My blatherings to my husband re “restorative” dialysis and how you actually achieve that came to me before I read your post re “perpetuating” dialysis, so you see, you and I are on exactly on the same wavelength (well, it was YOU who put me on said wavelength!).