Margaret recently posted this edited question for me at HDC’s KidneyViews blog page.
My husband is trying to make the decision re: PD/HD. He is doing this without educating himself on either option. I am very frustrated with the whole process as I feel as though I am floundering in a sea of information. We went through an education program that lasted all of 30 minutes. We were sent home with reading material and DVD’s to watch [but] I’m having a difficult time with this whole process, with the [concept of] peritoneal dialysis, [and of] how “married” to the process am I going to have to be as the “helper”? I have a feeling that I will be the care giver and my home will feel like a hospital.
It looks like you might need a little help in understanding the various options – and responsibilities – for patients and carers – not only in both of the two main dialysis choices: hemodialysis (HD) and peritoneal dialysis (PD), but in the two main dialysis sites: home and centre.
To assist me in this answer with space and typing, I will use 5 main abbreviations …
HD = Hemodialysis
PD = Peritoneal dialysis
P = Patient
MC = Main (or primary) carer
EF = The kids, any significant others: friends, pets etc.
First, there are two main types (options) in dialysis – professionals sometimes confuse people by referring to these as ‘modalities’ – known as hemodialysis (HD) and (PD).
HD can be done either in centres (most commonly) or at home, where it is called home HD. I am not sure where you are from but the use of home HD varies, country to country. In the US, home HD is still very uncommon – perhaps about 1% of all dialysis. Conversely, in places like Australia (where I come from) and New Zealand (ANZ), it is commonplace and much better understood, catered for, supported (and taught).
PD is now a days exclusively done at home, though many years ago, there WAS a form of PD – called intermittent PD – that was supported at a centre. This is no longer the case.
As HD is most commonly centre-based (esp. in the US where I am guessing you come from), if you and your husband (the ‘P’) choose HD, while you can do it at home, it would still most likely be being offered to you as a centre-based option.
As for the issue of whether dialysis can or should be self-managed, or only managed with help from a main carer (MC) … attitudes to this also vary, country to country, with ANZ being quite comfortable with … indeed encouraging (or even insisting on) … self-managed care, while in the US, there is, to us here, the rather odd ‘requirement’ in some states and by some providers that an MC do all the work for the P.
So … in my view, the first choice to make is where you would prefer dialysis to be done: home or centre. I will come straight out and say that here in ANZ, our absolute preference (and approach) is to encourage home care wherever and whenever possible.
Now, home care is not for all.
The home may be unsuitable (too small in size, rented - with a mean landlord that won’t allow dialysis in their building … a range of site and size issues).
The P may be too unwell or unstable to manage at home, even with a MC with all the will and intent in the world.
Neither the P nor the MC nor the EF be willing to have dialysis in the home – and your comment about not wanting the home to be turned into a hospital is a valid one … and an issue for some … though now-a-days, most dialysis equipment can be hidden away when not in use with some simple decorating tricks [there is a good book about this written by a savvy decorator from Seattle, Jane McClure]
The P may live alone – in ANZ, this is not a contraindication but it is in some parts of the US.
Services and utilities may be sub-par … e.g. water supply … though there are now lots of ways around this, too … both with machines that do not draw on mains water, or with advanced (but simplified) filtering equipment.
But, having said that, home HD does have the best outcomes – and it does not have to be complex – and far more people can be taught (at any age) to do home HD than most even imagine could be. Here, in my unit, between a quarter and and a third of all our HD patients are at home on home HD while 20% of all our dialysis patients dialyse at home on PD.
So … decision one. Where would you both like dialysis to occur – if it can be arranged for either – home or centre.
If the answer is, by preference, ‘centre’ … then it will have to be HD.
If the answer is, by preference, ‘home’ … then is could be PD or HD … either.
The next decision is which type of dialysis: HD or PD … remembering PD can only be at home, while HD could be either.
Firstly, PD is quite simple, really. It isn’t rocket science, and there isn’t a whole lot of complexity to it. Here in Australia, we train most patients to do their own PD … and note, I said patients, as here, we rather insist the P take responsibility for their own care. It is, after all, their disease, their renal failure, and their problem. That is not meant to sound harsh or unkind … it is simply a fact. By encouraging the P to accept and take responsibility for the dialysis process, several benefits follow:
The P actually becomes empowered by, and proud of, their own self-management skills … while that may sound odd, but it is true, in practice
The MC no longer becomes the dialysis MC, but can concentrate on being the home and EF MC … this, in the long run, works better for all. And, the lifting of the added stresses from the MC of ‘doing the dialysis’ for the P helps to preserve relationships and stability and balance within the home.
If the MC should need to go away, or become sick, or need hospitalization, or just want a break … and that last one is so very important … then if the MC is the sole carer and doer of the dialysis, then the P will then be unable to self-care and need hospitalization (or some other respite care) too, so that the dialysis can be continued
So … one every front … PD is, should be, wherever possible must be the responsibility of the P, not of the MC. The MC and the EF can support, encourage, help (from time to time), and be ‘there’ for the P, but should not, in my view, become the P themselves, through enforced responsibility for the dialysis process.
PD can be done
Manually … i.e. exchanging the bags of dialysis fluid by hand = takes about 35-40 minutes usually 4 times a day: wake-up time, lunch time, dinner time and bed time. This is called CAPD = Continuous Ambulatory Peritoneal Dialysis.
Automatically … i.e. by an ‘automated’ machine, about the size of a brief case, that sits on the bedside table at night and to which the P is connected each night before bed by a long flexible tube that slips under the bedclothes and attaches to a ‘catheter’ that is placed into and through the tummy wall of the P … we now put these in in the Xray department as a day procedure and they can stay there – if all goes well – for many years. This is called APD = Automated Peritoneal Dialysis.
Most of our patients here use APD, though we teach them to do CAPD so that, should there be a machine problem (rare) or they want to go away for a day (night) or two, or for a long weekend, and not want to have the bother of packing up the machine to take away too (though this is not difficult to do). Many of our P choose to do manual exchanges while away and return to the machine when back home.
Connecting and disconnecting to and from a machine is not hard. A minimal amount of dexterity is needed to ensure a clean connection and disconnection, but it is not difficult to do, and there are a variety of aids for those whose fingers aren’t strong. The main issue is sterility … i.e. not touching the wrong bits at the wrong time … and this is all about the P (in your case, your hubby) learning and faithfully following the few very simple steps that he will be taught in the teaching process.
HD, on the other hand, can be done either at home or in a centre. HD is more complex … there is no escaping that … but, for those who choose to do it at home, it is most rewarding, it offers the greatest flexibility in time and hours, it can be done at night during sleep so that, just like with PD, the days can all be free, and there is also no doubt that home HD offers the best long term health and survival outcomes.
Home HD is more complicated than PD in the home – and there is no escaping that fact. Nevertheless, we find that between 25 and 30% of all our HD patients can manage at home – indeed, once home, we find that they wonder why they never thought it would be so confronting.
However, at first, there is no doubting that it takes guts and courage, and it is, at first, confronting – it would be silly for me to say it isn’t. But it is a hurdle that can be overcome, if the P is capable (and, in our hands, up to 1/3rd are), and if the MC and EF are supportive. Self-needling is practiced by all our P … all. We do not delegate this to the MC. Gentle, slow, encouraging teaching gets all out P through this hurdle … and it is the main psychological barrier to home care … but we do ‘get there’ and once ‘there’ – once self-needling, we find the P will not then let anyone near their needle and their needling other than themselves!
HD can be done – as (in my view) a fall-back position – in a centre. This is by far the most restrictive form of dialysis. Not only must the P (and their MC and EF) kowtow to centre rules, schedules, times, and practices, but it is also the dialysis that offers – for the most part – the shortest and least frequent of dialysis times, the physically most draining of all treatment options, and the worst day-by-day well-being. In a centre, dialysis is ‘done to you’ rather than done for you. The P is kind of ‘captive’ to the process = neither, in my view, good for the morale or good for the body.
OK … I am a home dialysis devotee. I admit it. But the data would support my view.
In the end, you must fond out all you can about the options – and this is only an overview.
Dori Schatell and I have written a book ‘Help, I need Dialysis’ which is, I think, a pretty good book! That, of course, is an unbiased opinion! I think it might help you a lot. If you are interested, you could get a copy at the following URL:
Finally, Dori, Beth Withen and I have written a decision aid: ‘My Life, My Dialysis Choice’ … it is a web-based decsion tool to help guide people to a dialysis that best suits their lifestyle and life aspirations. You might find this helpful too. You can find it at the following URL:
I hope this ‘starter pack’ has been of some help to you.
I’m sorry but I really think death is a better option than going through the torture of dialysis.
And I hope this sounds like a big kick in the arse to all Nephrologists who like to paint a rosy picture of dialysis as being something that will adequately provide some suitable quality of life to the patient - it is. What an atrocity that lie is. Anyone can go to a renal clinic and see the truth for themselves.
And Nephrologists who are ONLY in the business of supervising a patient’s decline to renal failure and nothing else, can then simply wash their hands when end-stage occurs with smug pithy comments like: “It is, after all, their disease, their renal failure, and their problem”.
Sounds like dialysis is a profitable business to many parasites who become very offended by any request or plea that something be done to prevent kidney failure in the first place!
I am sorry you feel that way … And there are many patients - people on dialysis, people well on dialysis, people who are living productive lives, working, raising families, participating … who would vehemently disagree with you. And, while not one of them would chose their illness, their limitations, the awfulness of the ‘fact’ of their dialysis, few would take your stance, or view so harshly those who try to help them - as and how they can - to live those lives as well as possible.
I do understand your bitterness and anger, yet hope you may be helped to some acceptance - then to some forward hope and engagement in what must be, for your husband, for that is the best way for you to help him … which is, after all, what you first sought advice to do.
In your current frame of mind, I suggest you seek advice from your husbands treating team … interchanges on the Internet are not your ideal solution.
I am sorry my attempt to help offended you … and I fear you may have misread or misconstrued what I said. I am afraid I am not able to further answer your posts while you feel so negative about your husbands care. You should discuss your feelings as soon as you can with his caring team