I need a good argument

Hello Dr Agar.

I hope this thread finds you well. I posted this in the HD forum and as you see from Dori’s reply she suggested that I post it up here for you to read and hopefully help with the argument. so here goes

(My post)
I am to start dialysis soon and would like to go on NHHD. At my local renal unit they are very obstuctive about going on to NHHD straight away. They also said the the training would take around 12 weeks to complete. They also stated that to do NHHD they want you to learn slef-cannulation first then go on to the training. They also explained that there was a waiting list and just because you may be at the top of the list you might not be the next to start the training.

In my defence I am still comparatively young and have a young family to take care of. I really don’t want to spend lots of hours going to the hospital every week. Also the NHHD treatment is softer and has a better out come for the patient as we know. It would also be more cost effective for the hospital for me to do NHHD. I have found losts of documents and articles to support this agrument but they are still saying no way. Is there anything else that I can argue to help make my case and mey be change thier minds?

Does anyone have a link to share that would help me in my argument to get the choice of treatment that I want rather than what is more convenient for the renal unit? I would really appreciate your advice.

(Dori’s reply)
I think it’s terrific that you’ve done your homework and learned which treatment would best fit your life. A few thoughts, though, as to why you may be running into so much resistance:
1). Your clinic may have found that folks who start out in-center appreciate home more, because they have a better contrast with how lousy they feel there and then how much better they feel at home. This makes the effort of home treatment seem more worthwhile. Since the clinic has to invest in your training (they don’t break even on you for a year or more), they want to be sure that if you go home you’ll succeed there.

2). I believe they are vastly exaggerating the training time (12 weeks?! Unheard of!), perhaps to scare you off. I have to wonder how large their NHHD program is. Are THEY confident in their training skills? NOTE: You WOULD need to learn to put your needles in first.

3). Truthfully, it’s rare that folks go directly to any type of home HD. Keep in mind that most people don’t do the kind of homework you have, and they’ve never heard of it. Certainly, most people don’t know how very much better NHHD is (we’re working on that!). So, I wonder if the clinic might be willing to compromise by letting you go straight to short daily home HD? The training time is quite a bit less. It would be a lot MORE work at home while you do it–but if you succeed, I suspect they’ll be willing to let you move to NHHD pretty quickly, and the additional training would be pretty minimal. Another option might be to start on PD, prove that you can handle home treatments (you likely still have some residual kidney function) and then go to NHHD… But, that would depend on your willingness to consider PD.

How’s your insurance? If you have a good employer group health plan (EGHP), your clinic is likely to make a LOT more money if you can keep your job and EGHP than if you lose it because standard in-center HD makes it impossible for you to work. Maybe the home training team doesn’t understand that, but the clinic administrator would. Talk to him or her. Also, find out exactly WHAT the objection is, given your need to continue working and support your family. We’re happy to talk with those folks if it would help–send me a private message and I’m happy to share my contact info. Also, consider posting this same question to Dr. Agar. Perhaps seeing an answer from a nephrologist who deals with straight-to-NHHD patients himself would help overcome their reluctance.

Oops–forgot to ask if yours is the only NHHD program in the area? If not, and if your health plan lets you check out another, consider a different clinic. If your doctor is the issue, you can also change doctors.

Once again I appreciate your learned response.

Thank you

Shaymon

Dear Shaymon

As I see it, the crux of your question surrounds the case for or against the direct training new patients into NHD from CKD5. There are pro’s and con’s to any argument – and the following are, I think, the main ones.

Certainly here in Australia, many of the more established NHD training services train direct to NHD. Many of us feel that it is better that a patient who, by preference and suitability, is destined for home never sees the inside of an in-centre service. Although this is strongly my own view, in practice service logistics often gazump the ideal – most commonly due to the lack of a home training chair at the time when, otherwise, direct entry to home training would be anticipated.

Though I think I dealt with this recently with you under your question ‘Route to NHD’ … here it goes again:

Our home training unit (HTU) was originally set up with 4 chairs: 3 x home training chairs and 1 x ‘respite’ chair to cater for those home patients who, due to circumstance, problem-solving or other issues at home, needed to be supported for a short time back in a care-facility. We chose our HTU rather than our fixed dialysis facilities as the optimum place to site ‘respite’ as it ensured both a continuity of familiar home-sensitive staff and an environment where a return to the home is still and always the primary and ever-intended goal.

But, as our service grew from 10 > 20 > 30 > 36 home patients out of a total haemodialysis population in our service of 115 HD patients (36 at home and 79 in facility care … excluding of course our significant home CAPD and APD population), we have been unable (logistics/space/funding) to expand our HTU. Coincidentally, our larger home numbers has led to a higher HTU usage for ‘respite’ purposes – for (1) needling and other access issues, (2) home ‘rest’, (3) carer or other home-dweller illness or absence (for those used to home-carer support), (4) retraining issues, or (5) post surgical recuperation (if needed). This has put premium pressures on the availability of actual training chairs.

As a result, we have not been able to admit new trainees as regularly as we would like to the HTU. I know that other services (Royal Prince Alfred in Sydney, Monash Medical Centre and the Royal Melbourne Hospital in Melbourne and the Princess Alexandra in Brisbane: all four are much larger than Geelong and all are strong home training centres) all preference towards direct training too and all have larger capacity and more flexible HTUs than ours now.

This is a problem we need to correct in our own service – but it is not an issue of ‘intent’ or belief, but one of logistics, space and funding.

Against this argument of ‘direct entry to the HTU’ is the one Dori cited: to ensure some time is spent in facility care to ensure that the patient who then goes home has a clear understanding of how much better it is to be home than in facility-based care … that to fully appreciate the benefits and freedoms of home, some time should be spent in the ‘purgatory’ of facility-based care first.

I don’t often disagree with Dori – and we are both closely on the same page in our views that home dialysis is best – but in this case, I believe that argument is a punitive one … if, of course, it can (logistically) be avoided.

While our patients learn to self-needle and self-set-up as a routine part of their training program at the HTU – and self-needling is a part of the HTU training program that is much easier than most think – if there is the need (ie: due to a lack of HTU chairs etc) for a patient to spend some time in the satellite system before entry to the HTU, our satellite system doesn’t sit around doing nothing … it pre-trains! There is absolutely no reason why the satellite staff can’t contribute to the training task – indeed it makes them an integral part of rather than separates them from the home dialysis ethic and thrust of the service.

As previously stated in my answer at ‘Route of NHD’ (see previous post), our training time is 4-6 weeks. The fastest I can recall was 3 weeks. The slowest, 10-12 weeks. It used to be 3-4 weeks but as our home patient profile has trended towards the 70+ age-group, the training period has pushed out to 4-6 weeks, as a mean. We try to allow trainees to train at a pace comfortable to them, rather than allocate a prescribed training period, irrespective of the capabilities and progress of the trainee. Younger patients tend to train faster, older patients take their time (that’s OK – simply, they do) … but all find their own training rhythm and the training staff adapt to that, rather then trying to fit all patients to a set and fixed schedule.

Funding is an issue that should never be minimized. As I understand that you are from the UK and not the US, insurance will be playing a lesser role in the decision tree than will be unit funding from central sources – in your case, the NHS – and this may be impacting on the ability of your unit to fund your program. Clearly I cannot help resolve this. However, while the claims that I (and others) have made and supported with data (see Agar JWM, Knight RJ, Simmonds RE, Boddington JM, Waldron CM, Somerville CA. Nocturnal Haemodialysis: An Australian cost comparison with conventional satellite haemodialysis. Nephrology (Carlton) 10(6): 557-570 December 2005) regarding the cost efficiencies of home dialysis compared to any form of centre-based care only apply once a program has reached a critical home-based patient mass. This means, in our experience, having somewhere around 10-12 patients at home. Less than this number, and supporting NHD can mean a significant added expense to the service.

Why? … well, put simply, a training program, its training staff, the home support systems required – all have to be assured and in place for each home patient. Establishing this infrastructure for the 1st, the 2nd, the 3rd etc patient is expensive, on a per capita basis, until sufficient patients (10-12) are at home in any one home program to allow the reduced actual costs of home care to defray the cost of the initial home support systems that must be established – from patient #1.

There was a useful supplement to Hemodialysis International (HDI) where there were a number of useful papers generated from a side-symposium of the 2008 ADC on Home Hemodialysis … one was a paper of my own which dealt with some of the practical issues to do with home dialysis encountered by home training programs … see Agar JWM. Home Hemodialysis in Australia and New Zealand: Practical problems and solutions. Hemodialysis International. 12(Suppl 1), S26-S32, July 2008.

My own website @ http://www.nocturnaldialysis.org may also be of some use, too, if you and/or your unit staff haven’t visited it or seen it already.

While I am not sure if this will help you, perhaps a realization that others grapple with similar issues may help you and your team as you establish your home care.

Shaymon

Did that help?

Let me know if you need more.

Hello Dr Agar,

Thank you for your reply and sorry for the tardy response from me. Work at the moment is very demanding and its taking me away.

Anyway back to your question, as always you are very informative, concise and balanced within your answer . It has given me lots to think about and maybe I’ll change strategy in trying to get the treatment I want.

However, and please don’t take this the wrong way you sound a little like my wife talking. She’s a midwife and like you very clinical in her answers in the field that she knows about. But at times I need to remind her that there’s a person in that patient who has needs beyond just medical.

In your answer you gave very sound reasons in your argument from a clinical and financial point of view but there wasn’t any mention of perhaps other factors which could determin fast-track to NHHD training. For examples do you not consider that someone like me who has a young family and would much prefer to stay at home for the dialysis than spend many hours going to the Unit for treatment and missing out on family life. Some one who would have to give up work to fit in the hours offered by the unit for treatment, distance of travel, care giver support. All these add to the general well being of the patient which in my opinion should be part of the equation as well as the clinical and financial needs of the hospital. Does your unit consider these and other mitigating circumastances? Shouldn’t all units do so? After all an eager and co-operative patient must be easier to care for than one who in general is unhappy or dispondant with the treatment they recieve.

I think that if I am to argue my case successfully I need to come from all angles which in my opinion include the later as well as the splendid points raised by your-good-self.

I appreciate your time as I know that you are busy too.

Thank you

Shaymon

Shaymon, you are absolutely right about the importance of factors like wanting to keep working. If your clinic isn’t considering them, they should be! The question to ask whoever is in charge of the clinic is (and go as high up as you can): “What is the purpose of dialysis?.” If you get sputtering, you’ll know that the clinic is off-base. The purpose of dialysis is NOT–contrary to popular US belief–to remove urea from the blood so the government will pay you money for it. It’s to allow someone with kidney failure to live a full life–one that is as normal as possible.. When the purpose of dialysis is straight in clinic staff’s heads, the priorities get straightened out, too, and you should have no problem getting your training. If they answer this question correctly but still won’t help you, there is something in the way they are perceiving YOU that makes them think you would not succeed. Challenge them on it!

Hello Dori,

Thank you again for your reply. This has cheered me somewhat as I thought that maybe I was on the wrong track. However the points raised above are just as important as the clinical treatment and financial implications, in my humble opinion.

Life is for living not just dialysing, and yes a basic human right is to have as normal a life that one can get. Clinical and financial reasons are important but moreover so is ones quality of life. In much of what is said in this forum (and others) the treatment regime is agreed with the patient and Neph team not dictated.

If one has life only to dialise then i would suggest that the treatment regime is wrong. For some a trip to the unit 3 times per week maybe what they like to do and use it as a social outlet as well as a treatment session but not all people see it that way, me being one of them. I’m looking forward to see what DR Agar’s perspective is on this too.

I do admire him as he does not hold back and says it like it is, and thats a good thing. I wish that more people could express themselves as well as he does. It’s a pleasant relief that he says what you need to hear and not what he thinks you want to hear…there’s a huge difference there and empowers people to make an informed choice. Yay for Dr Agar.

Thank you again Dori.

Yours

Shaymon

Dear Shaymon

All you say is right … dialysis should be more, much more, than a means to simply stay alive. It is (or should be) the means by which a patient with CKD can aspire to restore life and normality - in all senses of the words and as far as it is possible to do so.

So, I agree. I would never believe it to be otherwise.

All I was trying to say in my responses above was that, despite our every good intention - for every patient - to restore the best quality of life we can, practical hurdles still remain in the way. These are, commonly, the problems of spaces, logistics, staffing and funding. Even with the best of agreed intention, either the patient - through intercurrent illness or circumstance, or the team - through the surfacing of logistical issues (and as much as we think they shouldn’t occur - they do), can fail to meet that agreed intent.

It is our responsibility to tear down those barriers, those hurdles, as best we can - and we have, I think, made a fair fist of doing that here in Australia - OK, still short (far short) of ideal, but still, a fair effort.

The individual patient is right to seek the best they can - and would be foolish to do otherwise. So, from a patients’ perspective, any failure to meet that ‘best’ must be hugely frustrating, even to the point of anger at the system and the care providers. From my perspective, as a care provider, I can see and understand that frustration - even anger - at my (our/the systems) shortcomings to meet that expectation … yet I also now that despite our best intent, we can (and do) sometimes fall short.

We run an active training program. We train round the year. We have (as explained in my prior answers) a 4 chair HTU but with training chairs now set at a premium through (1) the weight of the training queue and (2) the respite needs of the 35 home patients currently in support at home. Yet, we support as high (or a higher) proportion of our HD population at home as any unit I am aware of in the world - with perhaps the single exception of Christchurch (NZ) … NB: (for myself) I must ask Kelvin Lynn re his latest numbers!

We have sustained for the best part of a decade +/- 30% of our HD patients on NHD in the home - not in centres at 3 x week (not my personal ‘ideal modality’ for providing NHD) but in the home at up to 6 x week long, slow frequent HD … as I think it should be.

Even so (or perhaps because of) our successful training program and the number and increasing overall age of our patients who want access to overnight haemodialysis in the home and who thus seek training for home NHD, we struggle to put them through training in as timely and seamless a manner as some would like.

In Australia, where funding is through government, the purse strings are not as loose as we might like them to be … though, that said, I reckon our government(s) do bloody well by us in the main and do the best they can to be supportive and provide funding - given the pressures on them from other sectors for a limited health dollar. This will be even harder, now we have to try to rebuild a highly populated slab of Australian infrastructure and cities (greater in area than Germany, France and Spain put together) after our floods, fires and cyclones.

We can’t get (and are now even less likely to get) additional training chairs. More-over, we don’t have the space, the equipment budget nor the staff funding to add to our (limited) chair training unit.

We’d like to! We agitate to! But … the health dollar is finite and, for the moment, is likely to be even more ‘finite’…

As such, however, we do the best we can to get all patients who seek home - home … and in as timely a manner as we can.

It does, however, yield delays, hold-ups and frustrations … not only for our patients but for we, the unit staff, too.

And … it raises constant dilemmas as to who is the most deserving of the next training spot. Should it go to the newly identified working-age man with CKD5 and with a young family? Or … should it be given to the older-age retiree who was has been on the training list for some weeks and is desperate to get home to look after an ailing spouse.

Difficult questions. Difficult decisions. Especially so if there is limited ‘where-with-all’ in the program.

All I can say is that we, in my unit, do try to do our best with the cards we have. And … we constantly seek to be dealt a better hand as well.

In response to your comment … clinical and financial reasons are important but, moreover, so is ones’ quality of life. In much of what is said in this forum (and others) the treatment regime is agreed with the patient and Neph team, not dictated … I do hope we are never seen to be ‘dictating’ care. We agree on care - yes - but then … bang! … there is no training chair immediately available and a queue for the next at that! Then, just as a training chair opens up, a current home patient needs a re-training run or two.

We juggle, we balance, we strive but, we do not always succeed. We do our best. Maybe in a society where the patient pays and there is more funding flexibility, there could be a more immediate training answer provided. But, that is not the health system under which I work. In the US, where patients (or their insurance companies) pay, perhaps this might be easier - yet, oddly, there is minimal home haemodialysis provided there in comparison to Australia - where funding is from the public purse … and that is the most difficult of all dilemmas to explain!