Trust issues

[MooseMom]

I try to be an informed and pro-active patient.  I do my research and make my plans accordingly.  I am compliant and inquisitive; in my very humble opinion, I believe I am a good patient.  As I get closer to dialysis, I continue to learn about my options, but as I do so, I am becoming increasingly wary and fearful that I may not get the best treatment because it may affect someone's financial bottom line.  I have discovered that I have "trust issues."  I have been pleased with my neph so far, but I am not yet in his dialysis clinic, and I can't help but suspect that that may be a game changer.

After reading blogs such as Bill Peckham's and Renal Fellow and other such things, my wariness increases.  It's just all so complicated and too much for my little toxic brain.  So my question basically is this...what can I, a reasonably intelligent and informed renal patient...do to ensure that I get the best treatment there is?  Do I demand home hemo?  Do I demand subcutaneous epo shots as opposed to in-line?  What are the signs that my neph/clinic may be more interested in profit than in keeping me alive and well on D?  Thank you for your replies.

(For example, is being "bundled" the same as being "screwed"?)

[okarol]

You're already at an advantage because you've educated yourself. Many patients learn about dialysis the day they find out they have ESRD and their chest catheter is installed.

[KICKSTART]

I know its different over there , but then again in some ways its not ! Over here a lot is about money and results (not ours!) All i can say is keep informed, if in doubt ask .... I dont know if you have the right to demand ? over here we just take it or leave it. Someone , somewhere is always making a cut back but theres nothing we can do about it. Just make sure you get the right treatment at the right time really 

[silverhead]

All I can relate is that we were very fortunate to be referred to our local not for profit Kidney Center (Puget Sound Kidney Centers) and have never had any complaints, because of my relentless pressure on them, they looked into offering NxStage and we were the first ones to go through the training in this area, they could not have been more helpful or supportive in all that time. Since that time Davita has moved into the area and has been getting some of their patients to transfer over to them, but I find it rather strange that they will only accept those that have Medicare AND private insurance. Never having to deal with them myself, I can only rely on the numerous negative reports I read on the net. So my only advise it to look into the options you have in your area.......

[cariad]

I know its different over there , but then again in some ways its not ! Over here a lot is about money and results (not ours!) All i can say is keep informed, if in doubt ask .... I dont know if you have the right to demand ? over here we just take it or leave it. Someone , somewhere is always making a cut back but theres nothing we can do about it. Just make sure you get the right treatment at the right time really 

We certainly have the right to demand, but then again, I would argue that you do as well. Whether or not you get results from your demands is the key, and I can tell you here that that will be an extremely complicated calculus. Medicare pays for 80% of dialysis, and they certainly need to control costs. Private insurance really puts a patient in the same position, though, as they seek ever-larger profits. Has anyone ever phoned an insurance company to hear "Never mind the costs, this is you're health we're talking about!" And who among us can switch insurance companies at will? I receive insurance through my husband's work (or more accurately, COBRA, but let's not even go there) There was one option, two at his previous job, but both choices with the same company, so they really do not care which one you choose. It's not like I could ever threaten to drop an insurance company - they would probably send me a pricey bouquet of flowers if I ever did! They do not want to insure me, no one does, but because of our bizarre system they are forced to. That does not exactly put one in a position of power.

I think if MooseMom were to have problems at her clinic (hopefully not!!!) and the normal complaint channels were not working, her options would be similar to yours - report them to the government. But the government certainly will not intervene in most cases, and it is a huge risk to a patient to complain at that level -  retaliation and all. My guess is that if I felt that I could not trust my dialysis unit I would either switch units (not always possible and much more complicated than it sounds - I live in a city with a notoriously high ESRD rate and the worst selection of nephrologists I've encountered) or put the rush on NxStage training as that seems to be everyone's best bet long term.

I think the bundling will work if there is plenty of regulation and oversight. (In other words, a conservative's worst nightmare.)

MM, I would suggest you try not to worry about the dialysis clinic environment until you get there. You could go years without needing it, and you really won't know if there's anything to worry about until you start. I thought you were planning on NxStage? Did something change?

[MooseMom]

Contrary to appearances, I don't sit in a dark corner and conjure up things to worry about!   I prefer "constructive concern" to "worrying".  I guess I just want to be as informed as possible while my mind and body are still reasonably fit.  I don't anticipate any problems, but I do wonder how you know you are getting the best possible treatment and are not falling victim to a "profit is all that counts" mentality? 

Yes, I still plan on doing NxStage, but after reading some of Nephrologista's thread re bundling, I have to wonder if it will still be an option for me when it comes time to start D.  Is NxStage in peril or not because of cartridge costs?

So I will put the question out for general discussion...do you fellow IHDers believe you are getting the best ESRD treatment possible?  If yes, how do you know?  If no, why not?

[Pam]

MoosseMom......I had almost 10 yrs before I started "D" although it was only the last 4-5 yrs that I started getting educated. I went back and forth from I can do this to no way in hell!!!!!
About 6 mos. before I started I decided I wanted to see first hand what a Dialysis center was. My Neph is the best! He is the Director for a Fresenius Clinic. It is small only 24 chairs. In the 18 mos I have been going, the staff has not changed at all. 7 techs, 5 full time and 2 for fill ins. 2 PA's and 2 RNs. We see the PA once a week and the Neph 2 times/ moonth.

When I decided I wanted to visit, I went on a Mon am. They wouldn't let me inside but I sat in the waiting room and visited for a long time. you will learn much more from talking to other patients. The next time I went on a Thurs and in the afternoon.Those 2 visits helped me a lot.
I have never seen anything that would say cost cutting, but who knows what goes on in those offices.

So far I have only had 1 very small glitch. I started having severe headaches. I went in on a Wed and asked the RN if she would change my dry weight from 54.5 to 55. Only .5 was all I wanted just to see if that would stop the headaches. She said "Sorry I can't do that with out the Drs. ok" well just about then he walked through the door. His answer to her was, Pam. is educated and know what she is talking about. If she wants her dry weight changed just do it" what an ego booster and it took care of the headaches.

I guess what I'm trying to say is not to worry so much, Don't look for problems that don't yet exist. You are very educated and when your day comes you are going to do just fine.

Pam

[MooseMom]

I guess the simple answer is if you feel well enough to lead a fairly normal life, if your blood pressure is under control, if you are not anemic or malnourished, if your treatments do not make you ill or faint, if your labs are within normal range, then that tells you you are receiving good treatment.  Are there any other benchmarks we should be mindful of?

[jbeany]

Is the center clean?  Are the nurses capable and willing to answer questions or do they brush you off?  Do you get to see the doctor more than a few minutes once a month?  Do you feel rushed during appointments?  I think visiting the center is a great idea.  Talk to a few patients in the waiting room.  Are the scheduled times any where close to when they get put on?  Are the nurses sticklers for nonsense rules or is there some leeway for patients on things like cell phones or snacks?  Ask the patients how they get along with the social worker.  The bad ones don't last long at good centers, so if the social worker stinks, you can bet the level of care isn't that great over all.  Check out the patients as they come in or out.  Are they all red-eyed, weak and pale?  If every single patient looks ill, there's a problem with the center, which is probably only interested in providing a bare minimum of care, not helping the patients be as healthy as possible.   Ask how many patients are on home hemo or PD.  If there aren't any at all, that means they don't offer some of the best options for treatment. 

You'll be able to find out quickly how your center rates - and you can get plenty of examples on IHD of how things should and shouldn't be done.   

[Bill Peckham]

Same rules apply as prison - on your first day establish your rep, go right up and smack the biggest nurse there as soon as you walk in the first time ....


I'm probably not helping. Actually the waiting is the worst part - thinking about starting is almost always worst than starting. One thing I think can help evaluate a unit is find out how long the employees have been there (and in the field) and what kinda of turn over the unit experiences.

[cariad]

Same rules apply as prison - on your first day establish your rep, go right up and smack the biggest nurse there as soon as you walk in the first time ....

Then after one of them cannulates you, give a sneering laugh and ask 'Is that all you got?'

[lorna]

Never hear about a difference in how you recieve an epo injection, just curious whats the benefit of one way over the other? does it diallyse out if its put in the line? Im not new to dialysis but new to hemo and its a whole different ball park!

[Phraxis]

I would say that educating yourself is the best way to reduce anxiety but having had almost two years to study the subject since my sudden onset of kidney failure, I am so grateful that I went from "fine" to failure to transplant so quickly -- the waves of anxiety were mercifully of small duration and aptitude.

I believe that if your handle your treatment as a joint effort between you and the dialysis team, and force them on that path you will have better results than making it a "confrontation" situation. And while I am not one of them, there are many very knowlageable resources on IHD.

Safe journey.

[Nephrologista]

I think it goes best if you approach it as a collaborative effort.  Keep in mind that for many aspects of kidney care, there are differing and valid opinions.  For example, the IV vs SQ Epogen.  The recent data contradicts earlier studies and there is no definitive answer.  My unit has chosen to continue IV for now because we think our patients get enough needles as it is, and that the evidence that SQ works better isn't strong enough to justify a change.  If a new patient came in and asked for a discussion about SQ, we'd be thrilled!  And would accomodate her if she felt very strongly.  If a new patient came in demanding SQ, and was suspicious and hostile if we tried to have a discussion about the pros and cons, well, that's her right, of course.  But it isn't a good recipe for collaborative care.

I do have patients that tell me they know their bodies best.  The ones that at least listen to my point of view, I have no problem with.  The ones that insist that they are never going to get a catheter infection, that they're sure a fistula is a bad idea, while they're on massive doses of Epo and have lousy Kt/V. . .  well, they haven't got much credibility with me.  I don't force them to get a fistula, but they effectively shut off the conversation and don't get as good dialysis as they could.  We work around them instead of with them, and it's sad.

Also, MooseMom, since you're not on dialysis, you might think that every patient is like the ones here on IHD - interested in their care, proactive, informed.  We do have patients like that and they are a joy.  They are not the majority.  A surprising number seem as though they don't want to be bothered.  We keep trying, though.

[RichardMEL]

Also, MooseMom, since you're not on dialysis, you might think that every patient is like the ones here on IHD - interested in their care, proactive, informed.  We do have patients like that and they are a joy.  They are not the majority.  A surprising number seem as though they don't want to be bothered.  We keep trying, though.

very good point. It's hard to remember this when we're used to our little community of interested souls. I do see many patients come through my unit who are just not interested. There are a number of reasons - either it is overwhealming for them to deal with(or they just can't), or they think it's too hard to understand and that's what doctors and nurses are for, or they have no interest generally in looking after themselves and making the best of the situation they are in. I've seen guys, for example, constantly ignore their diet and fluid advice, and you just KNOW things will go south for them badly at some point. I've seen others who are older, perhaps with other problems like dementia that make it that much harder on all concerned, and still others from different ethnic backgrounds who find it hard to understand the issues involved, even when a translator is brought in to try and explain what is going on and what's important.

Like you say, those of us who take an active interest in our own treatment and want to be a part of it must really be good to work with from the medical point of view and make it that much easier for all concerned. I can't imagine how it must feel to see someone you're trying to care for be resistant to what you're telling them and, seemingly, ignore things that are offered in their own best interests. You can lead a horse to water......

[MooseMom]

Nephrologista, you make a good point...it is true that I do assume that most renal patients are much like the ones here on IHD, but I need only look at my own mother to see that I'm deluding myself.  Her renal function was destroyed as the result of surgery to repair an aortic aneurysm, and she was on dialysis 5 years before she died at age 82.  I'd ask her all sorts of questions about her treatment, and she wouldn't have a clue.  She followed her diet reasonably well and understood the idea behind phos binders, but other than that, she just didn't really want to know.  She was a smart lady, so all I can do is believe that she just trusted her medical team to do the thinking for her while she went about living her life as best as she could, which isn't a bad way to do things, I guess.  Her Davita clinic opened a new nocturnal in-clinic unit, and she seriously thought about doing that, but one nurse told her she shouldn't, and when I asked my mom why, she didn't know and didn't ask.

As long as you tell me why I should be doing this and not that or shouldn't be eating this but should be prescribed that, then I am more than willing to work with you.  I know that there are many aspects of CKD and its consequences that are still medical mysteries, so if you are my doc, tell me if you don't know instead of making stuff up.  I agree that a collaborative arrangement is best for all concerned.  Anyone involved in caring for a dialysis/renal patient has a big job, and I'm not going to make it more difficult.  Explain my choices, and I will probably choose what I feel will keep me healthiest even if it means an extra needle stick from time to time (ie IV vs SQ epo...not an issue for me YET).  Just remember that while I am not a trained doctor, I am not stupid, either!

Very interesting replies from lots of people.  Thanks.

[paris]

Also, MooseMom, since you're not on dialysis, you might think that every patient is like the ones here on IHD - interested in their care, proactive, informed.  We do have patients like that and they are a joy.  They are not the majority.  A surprising number seem as though they don't want to be bothered.  We keep trying, though.

MooseMom's mother was also on dialysis. She lost her Mom this year, so unfortunately, she knows a lot about the ugly part of dialysis.

I had a friend at church who got a liver, then a kidney transplant.  He use to eat and drink the entire time while on the machine at dialysis. We go to the same neph and I know how much the center frowned on what he did. Then after the transplant, he decided he was going to cut his anti-rejection meds in half and was going to wean himself off them completely.  I think seeing how nonchalant he was with all the rules made me decide to learn everything I could. I have a great neph and we have  respect for each other.  But, I was his first patient with a PRA of 100%. I got more information on IHD than he could give me.  At one point he said I knew more than he did about treatments for lowering PRA. 

Being on the other end of the needle, so to speak, can make you not want to follow so many rules all the time. It is a constant reminder that you aren't as healthy as you use to be.  I think with any disease, it is much easier to be giving treatments than receiving them.  The nurses and doctors can go home to their normal lives--ours will never be normal again.    That being said, thanks for trying to educate patients to help them take good care of themselves.   

[RichardMEL]

MM you made a great point about EXPLAINING things!!! I see sometimes staff tell patients "don't do X" but not actually give a good reason to them why. Often it's stuff I understand like "don't drink too much!" - and *I* know why, but the patients may not, and they may just react like "oh another stupid rule!" with no context as to *why* it is so important. I think being told WHY you need to do something you don't want to is so important. "don't drink so much BECAUSE it will stress your heart more, and potentially can build up on your lungs and cause breathing problems" is much more likely to get someone to sit up and listen and think "gee, that doesn't sound good..  I better watch my fluids more" - of course sometimes it takes a very bad experience of those bad things happening to convince some (yes, I'm looking at YOU, Texasstyle's hubby!!!) but often having an understanding of why something is important is very helpful.

To be fair we've had a new dietician recently who has been very good at explaining the various issues with new patients quite well.

[Nephrologista]

I think with any disease, it is much easier to be giving treatments than receiving them.  The nurses and doctors can go home to their normal lives--ours will never be normal again.   

Heavens, yes.  One thousand percent.  I find coming here and reading about everyone's experiences very helpful in my own practice.  I don't call them "report cards" any more and am more conscious of congratulating people on their hard work when the phosphorus improves or the weight gains come down.  I tried to before, but hearing your stories has helped convince me it's meaningful to many of my patients.

There are always going to be some that are hard to help, honestly.  Those take up proportionally much more of my time and energy, and it can be easy to lose track of the "quiet ones" who are doing well, and forget how much work they put into it.

[Bruno]

The only comment I can make is that if it is your aim to eventually go to home dialysis you will need to take charge of your treatment and thoroughly understand what you should be doing in almost any circumstance. You will need to learn to cannulate yourself and set your own goals. Because at home, it will be you who is calling the shots.
From reading your posts, MM, you can do it.
I can't comment on the American system, I'm in Australia, and there are real differences in the approaches of our beautiful countries.

[RightSide]

I do have patients that tell me they know their bodies best.  The ones that at least listen to my point of view, I have no problem with.  The ones that insist that they are never going to get a catheter infection, that they're sure a fistula is a bad idea, while they're on massive doses of Epo and have lousy Kt/V. . .  well, they haven't got much credibility with me. 

How do you feel about the ones who report to you that they have observed staff failing to follow proper sanitary protocols?

I'm one of those.  I've been forced to blow the whistle on poor practices on several occasions.
For this, I am despised by just those staff who got called out on their poor practices.

Screw them.  I would much rather be hated while I'm alive, than eulogized after I'm dead.

[Riki]

Nephrologista, I've had doctors who talked down to me because they were the doctor and I was the patient.  Some of them were only a few years older than me, and since I've been doing this since I was a child, I was a patient longer than they were a doctor.  I gave those doctors a lot of attitude.. but then, I'll give attitude to any doctor who talks at me instead of to me.

I believe that we, as informed patients, do know our bodies best.  In fact, I knew I had peritonitis when the doctors were trying to tell me I had gallstones.  They wasted a week doing testing for the stones when they could have been giving me antibiotics to fight the infection.. all because they wouldn't listen to me.

I think if you listen to those who you know are informed, and who are not just ignorant or belligerent, they can give you a good picture of what's going on inside them, stuff that you can't get from labs.

[MooseMom]

I have to say, and I don't know why this is, but I don't think I have ever been "talked down to" by a doctor.  Maybe I've just been lucky.

[Riki]

Maybe, MooseMom.. but I think that with younger patients, they talk to talk at us or down to us instead of with us..  When I was 15 or 16.. don't remember for  sure, was still going to the pediatric doctor anyway... I remember going to a clinic with my dad.  My regular doctor wasn't there, but his partner was.  He was talking to my dad, telling him how this show work and how that should work, and how my labs were.  I remember stopping him and asking a question.. he stopped, looked at me while tilting his head to one side, then the other, and went back to talking to my dad, not answering my question at all.  I think in that case, I was being talked over.  I didn't appreciate it much.  It still happens from time to time, when my mother is with me.  I think sometimes they forget that I'm 32, but I look the same as I did when I was 15..

[MooseMom]

Yeah, you're probably right...age does have something to do with.  Let's just say I'm not 15!   I most certainly would not appreciate it if a doctor talked to, say, my husband instead of to me.  You bring up a good point; those doctors who ignore what patients have to say are not using the greatest source of information, and that's just not very good doctorin'!