The sword of Damocles

I have read the discussion about CKD/dialysis and mental health/illness and am relieved to know that perhaps long, slow dialysis will restore some of my mental acuity. However, I have a slightly different question, and your answer may depend upon your personal philosphy as opposed to general medical practice.

Here in the US (and perhaps also in Australia?), once you are on dialysis, you have access to your clinic’s social worker who, I assume, can speak with you about your understandable anxiety regarding dialysis and what it means. However, for us pre-dialysis patients, such assistance doesn’t seem to be offered or even considered. In my own experience, I can tell you that I have suffered far more emotionally than physically (I know that will change in the not too distant future). Knowing that a sword hangs delicately balanced above my head…knowing that it will eventually fall upon me…is a tremendous burden.

When you deliver a diagnosis to a new patient whose prognosis you know will lead to something as monumental as dialysis, what do you do for that patient’s emotional/psychological well-being? Do you take note of his/her reaction, looking for signs that this patient may have difficulties dealing with the news? Do you have a list of psychologists on hand to whom you might consider referring said patient should the need arise? Do patients come back to you for their never-ending checkups and talk to you about their anxiety, or do they tend to just get out the door as soon as possible (that’s my strategy!)? If they do reveal their anxiety, do you offer the choice of anti-anxiety medication?

Treating a chronically ill patient with dialysis is (hopefully) a long-term proposition, so I would be interested to know what you and your colleagues do to make sure that as your pre-dialysis patients ready themselves for the transition to dialysis, they are in the best frame of mind. Or is this something you and your colleagues feel more comfortable in just leaving your patients to get on with themselves?

When you deliver a diagnosis to a new patient whose prognosis you know will lead to something as monumental as dialysis, what do you do for that patient’s emotional/psychological well-being? Do you take note of his/her reaction, looking for signs that this patient may have difficulties dealing with the news? Do you have a list of psychologists on hand to whom you might consider referring said patient should the need arise? Do patients come back to you for their never-ending checkups and talk to you about their anxiety, or do they tend to just get out the door as soon as possible (that’s my strategy!)? If they do reveal their anxiety, do you offer the choice of anti-anxiety medication?

I try to. The pressure of patients can be such that I and others don’t do this well - or aw well as we would like … so, yes, most here have built teams of people … most commonly trained ex-dialysis staff … as our pre-dialysis renal educators and councilors. Most Australian units have them. Nurses trained to ‘pick up the pieces’ … or more, ‘keep them in once piece’ … and yes, we have access to (though maybe don’t use enough) our community liaison staff in mental health.

I suppose we mostly rely on our pre-dialysis coordinator and educator staff to act as parallel travellers for the patient through the later CKD phases … though it can often be difficult to pick those who want additional input from those who want to be left alone (and sometimes it is those ‘leave-me-alone’ folks who really need our help the most of all)!

You have touched on an area we tend to do poorly (us too) … and I have no perfect answer for it except to say we have built a team here (and I know in other Australian services that similar teams and structures exist) who do as good a job in this area as the limited resources allow - sometimes better! But, there is always room for more, for better … and there will always be those who are under-identified, who are through-the-crack fallers, where we mis-recognize the signals, don’t get signals, or just plain run-out-of-puff in trying to assist.

Really? You have pre-dialysis renal educators and councilors??? Most units in Australia have them? And pre-dialysis coordinators??? I don’t even know what that is! I’ve never heard of anything even remotely like this here in the US. I’m absolutely gobsmacked! I guess here in the US, such services don’t contribute to some big dialysis company’s profit margin, so we’re left gazing upward toward the sword.

Hi MooseMom. I wanted to jump in and offer the Coping module of our award-winning Kidney School – a free CKD 3-5 self-management learning center that you can find at http://www.kidneyschool.org. The Coping module–as with most of the others–was first drafted by a psychologist. We intended it to do precisely what it sounds as if you need: help folks who are dealing with the blow of needing dialysis to deal with the emotional fallout. I hope you’ll A). Try it. and B). Report back to us–let us know if it helped you, and if there is anything you would suggest to improve it.

Hi Dori. I had briefly visited Kidney School in the past and don’t know why I had forgotten about that site, so thank you for the reminder. I completed the “Coping” module and found it to be actually very helpful. I had seen a counsellor two or three times this past spring, but some traumatic life events occurred and I have not returned. Those sessions usually found me wandering aimlessly in the deep dark forest of my anxieties without any clear path to the outside world. But the “Coping” module gave me a lot of structure, and I found that to be extremely helpful. It provided some very practical tools to use to construct effective coping mechanisms. Thank you for the suggestion.

By the way, I completed several other modules, and while I already knew most of the information contained in them, the information was presented very logically and very precisely and gave me a clearer picture of how all of the pieces in the renal puzzle fit together. Good job!

Actually, Kaiser in Southern CA has an extensive “Pre-ESRD” program designed to prevent and prolong the time before the start of dialysis which includes oversight by a case manager, pharmacist, dietician, social worker and physician working in a coordinated manner. Referral to this program comes automatically based on creatine levels without the need of a physician referal, but some do come at the direct referal of their primary care physician as well. There are actually some proactive health groups even in America. Kaiser’s program has been quite effective in delaying the onset of dialysis which saves lives and money for the system.

http://books.google.com/books?id=j6ziobfjJCwC&pg=PA314&lpg=PA314&dq=Kaiser+Pre-ESRD+program&source=bl&ots=a1V0mc742_&sig=5r3Vd_yOh0MR6iZ7VfKtBbUQ-os&hl=en&ei=4O3_TLzREpSWsgPopamwCw&sa=X&oi=book_result&ct=result&resnum=3&ved=0CCoQ6AEwAg#v=onepage&q=Kaiser%20Pre-ESRD%20program&f=false

Of note, one of the developers of the Kaiser Pre-ESRD program is my nephrologist Dr. Scott Rasgon.

Impact of predialysis care on clinical outcomes.
Hock H Yeoh, Herbert S Tiquia, Antoine C Abcar, Scott A Rasgon, Mohamed L Idroos, Sam F Daneshvari
Department of Nephrology, Kaiser Permanente Los Angeles, Los Angeles, California;

http://lib.bioinfo.pl/pmid:19379385

OK, well, now I am just angry. The only pre-dialysis program I’ve come across is a patchwork affair created by myself. I have a copy of Mackenzie Walser’s book “Coping with Kidney Disease; A 12 Step Treatment Program to Help you Avoid Dialysis”, and I was very pleased to find that my neph seems to be doing everything right by addressing each issue, but there hasn’t been any evidence of a coordinated, multi-disciplinary pre-dialysis program (although he did tell me to go see the renal dietician at the clinic). I have been seeing my neph for 6 years and we have managed to keep dialysis at bay for this long; I’d like to believe that that’s a result of damned hard work and mining for a lot of information on my part, but maybe it’s just blind luck.

Dr. Laird, I’ve read several of your posts on various sites such as IHD and DSEN. I followed the link you provided to the BioInfoLink library and tried to register, but three times it said the catcha caption I entered was incorrect, so I was only able to read the abstracts but none of the full articles. Is there a trick to registering? There are several articles I’d like to read but can’t seem to access. Maybe the abstract and conclusion are enough. I see there is a paper about critiquing the research methods used to quantify the adherence to fluid restrictions in adult HD patients…I’ll give that one a miss. Also the one about the Portuguese version of the Fluid Intake Appraisal Inventory…that’s the stuff of nightmares. ha

Dear Moosemom, Kaiser is an integrated medical group which gives it the leeway to do proactive programs such as the Pre-ESRD program and actually save money by doing so. The wall between part A and part B of Medicare prevents much of what Kaiser can do without much difficulty.

As far as the links, most site demand payment for the full article so I am limited in most circumstances to simply getting the abstract. The specific link is a different website than I have seen in the past. Unfortunately, I do not pay for the full article at around $30.00 for each article unless it is a very important paper. The links are simply for documentation and confirmation of any information I write about. Sorry, but I am not sure you will get past the sign in without giving the required money asked for.

Absolutely … most dialysis units in Australia and New Zealand (while I won’t say ‘all’ … in case I am wrong … it is all that I know of) have a team of people surrounding and supporting ESRD

The members of these teams include (1) pre-dialysis educators (pre-DE) who are (usually) trained ex-dialysis nurses who have moved into the pre-DE role of a full-time educator, councilor and dialysis ‘demonstrator’, (2) anaemia co-ordinators (A-C), (3) vascular health nurses (VHN), (4) transplant co-ordinators (T-C) and (5) medical social workers (MSW). Most units also have shared dieticians … by ‘shared’, I mean that the dieticians may have responsibilities across other medical units and services as well, as may the social workers.

My own service is probably a fairly typical middle-sized service. To give you some idea of how the Australian systems are set up, we (in Geelong) have 135 x total dialysis patients. This comprises a mix of 35 x Home HD (all nocturnal x ~5 x 8-9hrs/week), 20 x PD (mainly APD) , with the remainder on facility-based HD, mostly 4.5-5hrs x 3/week. We also run ~130 x transplants, 300+ x CKD4-5 and ~1200-1500 x general nephrology patients. We have 5 nephrologists (4 x full-time and 1 x 1/2 time) as well as 1 x advanced trainee registrar (in the US this younger nephrologist in training would be called a fellow).

We have a wonderful 1 x EFT ex-dialysis nurse who divides her full-time role between pre-dialysis education (~0.6 EFT), A-C (~0.2 EFT) and transplant education and coordination (~0.2 EFT).

We also have a 0.6 EFT vascular health nurse who runs our 3 monthly all-patient Transonic assessment and surveillance program and coordinates and runs our fistula management program, our surgical access lists and a range of other access related stuff. We have a part-time MSW and a ‘share’ of a dietician.

We have a purpose-built, self-designed electronic medical record which we have had for nearly a decade now. Ours was created by ourselves (and we think it’s pretty slinky!) and we like it far better than the off-the-shelf models that never do what you really want them to. Most (if not all) Australian services have EMRs in some format or other. Our EMR has a number of in-built alerts. Key among these is the alert which sets things rolling at an eGFR 25. When the eGFR drops to 25 or below, an automated response triggers several coincident events: (1) a notice to the pre-DE to contact the patient … of course it is the nephrologists job to advise and get agreement for this first but this is never very difficult …. and (2) a notice to the VHN about organising vascular access.

The pre-DE then contacts the patient and his/her family, brings them in at a separate time and then slowly (in as many sessions as is needed) works through the choices of dialysis and the best options – always in joint discussion with the managing nephrologist.

At the same time, the VHN will see, explain and arrange bilateral full-arm mapping vein ultrasonography and then an appointment at our monthly Fistula Clinic – a multidisciplinary clinic attended by (most of) our 5 x nephs, our 3 x vascular surgeons, our senior HD nurses, the VHN, the renal and vascular registrars (or fellow equivalents) and a few others. As this clinic can be a bit intimidating with all these people present, the patient and his/her family (they are always encouraged to bring people along) are always well-warned about “the cast of thousands”. At this clinic, we determine the best options for AVF creation (always native) and ‘book’ the patient for fistula surgery (usually as a Category 2 = max. 3 months waiting time) though there is an option for more rapid Category 1 surgical AVF creation if the creation of the AVF is deemed more urgent.

The same eGFR trigger is a defining ‘trigger’ in the managment process as it also asks questions of the managing nephrologist like: (1) is this patient for dialysis? (if ‘yes’ … pre-DE and VHN notification occurs as above): (2) is this patient for pre-emptive transplantation or listing for the deceased donor transplant list? (if ‘yes” … TC activation and education occurs): (3) does the patient wish to refuse dialysis and thus choose conservative, non-dialytic care? (if ‘yes’ … and this is a very valid, not-infrequently-chosen option among elderly patients in Australia … then the ‘Respecting Patient Choices’ and/or Palliative Care pathways and programs are notified and made aware that they may be called upon to to assist if/when needed).

With the conservative care pathways, a patient can (and sometimes does) change his/her mind … when that occurs, a return to the dialysis pathway is re-activated.

All of this is coordinated by our pre-DE who, in our unit, is the next closest thing to a saint! Most units I know have chosen this person (or, in bigger units, persons) carefully and well. It is a huge and complex job and ‘our Tracey’ is superb at it. Her knowledge and compassion are wonderful.

As for ‘we’ … the nephrologists … we still take (I hope) full overall responsibility for our patients, our programs and our services. However, CKD care is very much a team effort. All members of the team have their special expertise and gifts to bring. All are valued for it. We all rely on each other … and I trust my team to pick up gaps where I have under-performed or under-appreciated and to tell me so! And, I appreciate that.

As for myself, as director of my unit, I not only see and manage my 20 or so patients each day … these are a mix of general nephrology, CKD3-5, HD (facility and home), PD (CAPD and APD) and transplant (LD and DD) … but I also am responsible for the smooth running and overall satisfaction of our staff and patients alike.

I know that this is a pattern repeated at all renal services throughout Australasia (Aust and NZ).

It needs to be remembered that in Australasia, renal services are almost all run from tertiary referral, university-based, publically funded (ie: not-for-profit) institutions. The staff is salaried and is paid through the public purse. This applies to nephrologists, nurses – all. I will (briefly) describe the Australian Healthcare system at the pre-ADC home HD symposium next February in Phoenix as an introduction to updating on our successfully sustained and growing home HD programs here.

In addition, here, we do not have technicians. Most dialysis nurses are career nurses and are well trained, many having higher nursing degrees or diplomas.

Furthermore, we don’t seem to have the distortions and biases that ‘profit’ programs have tended to introduce in some other countries. As we are not so influenced by profit margins or other perverse incentives, management decisions can be hopefully taken in the best interests of the patient and I think, most of the time, we do seem to get it pretty right. Maybe that’s being self-kind … or self-deluding(!) … but, I really do think it is true.

Most Australian units (dare I say all?) are set up along similar lines to our own. Though the number of educators, co-ordinators etc. vary according to unit size … and we are always ‘at’ government and our institutions to provide more funding for more or everything (and I guess that is human nature), we all do still seem to manage pretty well and I don’t think too many fall between cracks in our system. This is not so, yet, for our indigenous CKD population - where we have not done so well no have such a good track record … though even this area, now, seems to be improving at last. There are special difficulties with dialysis provision in remote Australia and it is easy to point to ‘how well we do’ in urban Australia (NB: Australia is one of the most urban societies on earth with 93% of our population classed as urban c/w only 79% of the USopulation so classified by the World Bank and the UN) but there is much to be done in the very hard to reach 7% who are far-regional or remote … this latter group broadly encompassing our indigenous peoples.

Does it always work … and for all? … No! I’d be a fool to say it did (see the last paragraph!), but … for most, it seems to bring patients to the point of dialysis or transplantation relatively well informed about what is ahead.

It is in this milieu that we seem to manage our pre-dialysis education. It always surprises me that in your country, where the ‘spend’ on healthcare as a % of GDP is twice our own, more evenness of cover and service provision seems still to escape you. That is a problem that needs fixing. When I hear concerns expressed from the US about the ‘socialized medicine’ of other countries - like ours – and that this is some sort of ‘beast to be slain’, I am non-plussed, for I believe that we practice (or at least try to practice) ‘social medicine’ and, in my view, that is no ‘beast to be slain’ but a ‘joy to embrace’.

But, I guess it is just looking at the painting from another angle.

Oh, sure. HAVE a system of chronic disease care. :slight_smile:

MooseMom, thank you so much for your very kind thoughts about Kidney School. Dr. Agar and I are working on a book that will go a step beyond Kidney School–and will go even further to putting the puzzle together and helping folks see the big picture of kidney disease and its treatment. I wish everyone had done as much homework as you obviously have. There is no question that kidney failure is scary, but eliminating the unknown can make a huge difference and help you feel more in control.

Dori - and MooseMom …

I probably ranted a bit in my last post … I don’t mean to get preachy but sometimes do … but CKD and pre-dialysis care is important and if the system is failing to provide it, then that is a gap that needs to be filled. Perhaps the not-for-profit system in my own country sinks the money that would otherwise be considered ‘profit’ back into the programs we provide. At least I’d like to think that that is so.

Peter Laird has (correctly) pointed to the Kaiser program(s) in California … and they are exceptionally good programs. I think, too, from personal knowledge, that the North West Kidney Center programs in Seattle do things very well, too. While there are some wonderful programs in the US, they don’t seem as evenly available across all sectors, in all states and for all population incomes as it might be hoped they would be.

If equity of access is absent (or poor) in your own area, MooseMom, then you must fight to change that. it sounds as if you have a great nephrologist caring for you … so, stir him to change things if you feel they need changing!

Yes, Dr Agar, you did rant but it was justified. It is possible to get good pre-dialysis care in the US, but it seems to be contingent upon where you live and upon just how much good luck you have. My care has been good, but my education has not been; it has been entirely up to me to educate myself. One of my biggest beefs (and most satisfying rants) is how much I have to THINK. I feel like it is such bloody hard work staying healthy, that I have no real support and that once I get really sick, who is going to pick up the slack? It was appalling the amount of time I had to spend on the phone getting the necessary referrals (ie “permission”) so that I could schedule my cardiac appts for my pre-transplant workup. Each referral had to be worded in just the right way and have just the right code numbers and…how do sick people do this?

I lived in the UK for 18 years and don’t understand fully the “socialist medicine” epithet tossed about here in the US. I’m not sure that Americans really know what they mean when they talk about “socialized medicine”. It’s a political boogeyman, nothing more. But that’s another rant.

I do not know any of my neph’s other pre-dialysis patients. I don’t know if they’ve perhaps requested more information and have received it. When I see my neph, I ask questions only that are relevant in the present…I don’t tend to ask questions about problems and issues that I do not yet face. Perhaps that is my own failing. It’s also an issue of time management…I assume my neph doesn’t have time to discuss the role that anemia plays in LVH if I have neither condition, so I happen to learn about it because I happen to come across an article about it on DSEN and then happen to run into Dori who happens to tell me about Kidney School where I happen to read about this exact conundrum. Not the best template for pre-dialysis education…happenstance.

As for lighting a fire under my neph regarding education programs, perhaps I could gently ask him if he’s ever thought about having such a program in his practice. I live in a suburban area, and as both this area’s population and the incidence of CKD are growing, maybe I could suggest that the numbers are such that a coordinated pre-dialysis education program would serve our community very well. Since I am not yet on dialysis, I don’t really know how his clinic is run. It is privately managed, ie not affiliated with the big dialysis companies…I don’t know if that’s a good or bad thing! Maybe his clinic is the best in the whole region…I don’t know.

I do worry about how I’ll know if I’m getting good dialysis. Knowing that home hemo done longer and slower is the best way to go is helpful. But how many people under my neph’s care even know this much?

How does one find out just how good a clinic is BEFORE starting dialysis?

Try this article: http://www.homedialysis.org/resources/tom/200904/.

Dori, thanks for that link. It provides a good questionnaire I can use to begin evaluating my clinic. My neph’s clinic is a five minute drive from my home. They do offer NxStage training, but I don’t know the answers to the other questions posed that would give me a better idea of how much support I can expect. I think I’ll give the clinic a call tomorrow and start asking some questions. Again, thank you.