It's too late, but I'd still like to know

My mother was on thrice weekly in-center dialysis for five years after losing her renal function after an operation to repair an aortic aneurysm. She was never a candidate for home hemo as both she and her husband were both in their late 70s. At one point, her clinic (run by one of the two big providers) brought in someone to set up a nocturnal unit, and he has approached my mom to see if she was interested. She was because she hated having her entire life dominated by dialysis.

I encouraged her to think about this option because fluid control was becoming harder and harder to achieve. She also had a pacemaker put in, so things were starting to go a bit pear-shaped. She finally asked the clinic’s head nurse about doing nocturnal, and the nurse basically said “no way”. This surprised me, but my mother didn’t offer any explanations (she was one of those “I’ll do whatever you tell me, just get me out of here ASAP” dialysis patients).

Sadly, my mother died this past summer, and I never got to the bottom of this issue. So, my question is what factors would make in-clinic nocturnal hemo an inappropriate modality? What would have made my mother ineligible? Age? Poor cardiac function? What?

I can’t think of any off hand. It is better tolerated by all patients for the most part. Not sure why she or anyone else in the unit would not be considered. It improves outcomes, it is more gentle to the heart and cardiovascular system and it reduces LVH and improves quality of life. That would apply to all age categories across the board.

That’s exactly what I thought. Frankly, I think the head nurse couldn’t be bothered.

Age alone is not a reason why people should be denied home hemo. We have a story of a gentleman on our site who started home training with his wife when he was, I believe, in his mid-80s! (As far as I’m aware, he is still alive today). There certainly is no reason why your mom could not have done in-center nocturnal for physical reasons. Since those shifts tend to be from 8pm to 4am, the nurse may have thought that your mom would not have felt comfortable leaving the clinic then, or perhaps it would be too hard on your dad to go and pick up her up at that time. But that should have been your parents’ decision–not hers. Or, they may be “saving” those in-center nocturnal time slots for people who were working and could keep their health plan if they dialyzed at night. The clinic makes more money when people can hang onto an employer group health plan, and working patients do better when they can keep their jobs.

It’s so very, very unfortunate that standard in-center hemo as it is done in the U.S. (3-4 hour treatments) is the “standard of care” and the default that everyone is somehow suited for. In fact, as Peter correctly points out, nocturnal treatments are gentler and far easier on the already compromised hearts that most people bring to dialysis. We need change the notion that standard in-center hemo should be the default, increase minimum treatment times to 4 hours for all, and offer those treatments every other day. Tens of thousands of lives would be saved in the U.S. each year if we did.

My mom and I had discussed the logistics of mid-night transport. She lived only 10 minutes away from her clinic and drove herself to and from treatments, so I don’t think transport issues would have caused the nurse to nix the idea. That wasn’t an issue that seemed to concern my mother. I should have spoken to the nurse myself, but since my mom didn’t seem to care that much, I didn’t press the issue. I regret that. I wish I knew then what I knew now; I could have helped her demand better dialysis.

My mom may have tried home hemo, but I don’t think she had much confidence in her husband. They had been married only a couple of years before she had to start dialysis, and I know she felt guilty for the burden placed upon their lives. They had both lost spouses and had remarried for companionship and travel and fun, but a botched operation and dialysis put paid to that. She would never have asked her husband to be a caregiver. And of course that brings us a real obstacle to home dialysis…the effect it has on your closest relationships.

Firstly, I am sorry to have been tardy in responding to your post – it is Christmas eve here right now and I have just finished my long-performed and annual ‘gig’ at the neighbourhood Carol Service as Father Christmas (or, in US language - Santa) to 150 kids … so, there has been much Ho Ho Ho’ing and a lot of fake whiskers up my nose!

As for your post … I know it is too late but I think the response your mothers nurse gave of ‘no way’ when asked if nocturnal dialysis was a possibility was a response made out of total ignorance - or possibly out of fear - of a modality about which she clearly had no knowledge and certainly no understanding. Your thought that it may have been a ‘can’t be bothered’ response may also be close to the truth! However, to be chaitable (it’s Christmas) to the nurse, I suspect she is no different to the vast army of dialysis nurses across the US who have simply NO exposure, NO training, NO teaching about and NO understanding of optimum dialysis. As Dori has said in her response, US standard in-centre dialysis is woefully short and inadequate and is way behind even the ‘conventional’ and ‘standard’ dialysis facility-based care provided elsewhere in the world (Australia 4.5-5 hours, Japan 5+ hours etc …). So, it is not the nurses fault. But … it is the responsibility of the sytem in which she works to change practice to better regimens.

As for contraindications to nocturnal dialysis … I don’t believe there are any at all that I can think of … nary a one! This is especially so for facility-based nocturnal therapy where I can think of no conceivable reason to say that it might be contraindicated!

Age? … rubbish. There are many sprightly 80-90 year olds and some very doubtful 40-50 year olds … age is how old you feel, act and think, not a chronological number on a page. Though we do home-based and not facility-based nocturnal dialysis here in Australia, the oldest patient in our home self-management program is 82. He was 74 when he 1st went home, has had only two short AVF access revision admissions to hospital in 8 years of home HD (his only admissions) and has dialysed alone, at home (unaccompanied, unassisted) all of those eight years, his wife having died prior to his starting dialysis. Indeed 11 of our 36 home NHD patients are >70, 5 are 76-82 and 4 of these 11 are lone and unaccompanied dialysors. So … age as a contraindication? Rubbish!

Poor cardiac function? … no, too! The whole raison d’etre for long, slow, (and especially if also frequent) dialysis is the gentleness of it. I have discussed the benefits provided to cardiac function by NHD previously in a number of posts at this site … again, this is a reason why I should (sometime) go through the various key answers I have given in the past, categorise them and somehow turn them into a more easily searchable resource! If only I had the time … … But, the whole underpinning of the advantage of long slow frequent dialysis (nocturnal dialysis) is the lack of cardiovascular instability associated with it. This benefits the heart and is an advantage for those whose hearts are ‘a bit dicky’ … an Oz expression for ‘iffy’. Here, her answer was clearly given in ignorance of the facts.

Ineligible? … no way! We would do all our dialysis patients a favour by providing longer, slower, gentler and more frequent dialysis. This can only be accomplished through ‘while-sleeping’ dialysis, not only achieving better dialysis but also freeing waking hours for what wakefulness is designed to allow … life!

Though I apologise if the following offends readers - it shouldn’t - I have often used an analogy in my lecturs on NHHD which was first taught to me by my ‘better dialysis guide and teacher’ - Andreas Pierratos - who once said to me … John, good dialysis is like good lovemaking - the longer, the slower, the gentler and the more often, the better.

So … on all counts … ‘no way’ was a dark-ages response. Inch by inch, some of us are trying to drag our colleagues into the light. It may not happen in my time … but it will happen. The more ‘Moosemums’ out there who are prepared to question the status quo, the better!

Dr. Agar, thank you for your reply. You’ve said nothing that I didn’t already know to be true. That my mother’s clinic took the time and trouble to start a nocturnal unit while having a head nurse tell her that this modality was inappropriate just never made sense to me, especially as the new head of the nocturnal unit specifically approached my mom to give her some information about this way of receiving dialysis. Perhaps there was some in-clinic power struggle going on. I’ll never know.

There is one thing that I want to say. Learning about nocturnal/longer, slower, more frequent dialysis has been the one and only thing that has given me any hope at all of having a “normal” life on dialysis. The fear of dialysis causing me to become permanently disabled has had me inert with terror, especially after having seen how it affected my mother. The fact that I am younger and generally much healthier than she was has been no consolation. I felt doomed. Even worse, I felt powerless and hopeless and completely out of control of my own fate. But thanks mostly to this site, I see that while dialysis will never be a picnic, there is hope that I will be able to ask for and receive optimal dialysis instead of merely adequate dialysis. I face the future with a modicum of hope, and for this, I am very grateful.

Moosemom, thank you for taking the time to express your feelings so articulately. You’ve managed to capture, in just a few lines, a message I’ve heard from thousands of people who needed dialysis over the past 22 years that I’ve worked in this field. The crux of it is fear–and the absolute value of hope for a good life. The importance of hope is why we do what we do. You CAN have a good life, and you are poised to do just that. Have a wonderful holiday.

Beautifully said, Moosemum and Dori.

Just as Moosemum has so articulately captured both the often-unspoken fears of all dialysis patients everywhere yet, at the same time, their fervent hope for better outcomes, so too have you, Dori, captured the intent of we, the professionals who try, as best we can, to allay some of those fears and guide and provide a path to those better outcomes.

To those who read these pages, I (we) will continue to try to coax, council, cajole and chart towards those better outcomes as best we can. You should, as best you can, spread the word that there is hope, there are better horizons and that we are here to chart that course with you. Together, through these posts and the education and light they shed, we may find ways to slowly give impetus to the inertia of the majority.

A very merry Christmas to you all … and may your god be with you.