How can I help without lecturing?

[RichardMEL]

Seems to me that's the prime job of the dietician. I know in our unit when they came around they hand out all that sort of information.

[Riki]

they tend to pass me pamphlets of information on high phosphorus foods to avoid. I tend to pass them back, saying I have 3 of them at home already.  They keep giving me the same information, and I've had the same problem since I was 12 years old.  It doesn't matter if I take the binders or not, the phosphorus will not go down..  It gets incredibly annoying.

I'm with Richard. if you want to play a quiet game with one of the patients, that's fine, but leave me alone.  I'm good with my ipod, my imagination, and my involuntary naps.

Oh Riki if you were with me there wouldn't be in involuntary naps!!! 

 

(now that's a "game" I'd play!!!)

Unfortunately, Richard, since they are involuntary naps, it would probably happen anyway.. *L*  alhtough, I didn't have any today

[galvo]

Hey, Quickfeet, "my disease is on the inside" is the greatest response to "you're looking good" that I have ever encountered. I'm using it from now on.

[aharris2]

What we need, simply, is a copy of the lab results. With that, we can adjust up - increase binders, increase or decrease calcium tablets, spread out the high potassium foods. In the rare instance where we cannot identify the culprit ourselves, we will ask.

I have a real problem with our dietician and I don't know why. I have no respect for someone who comes around before labs and reminds us to take our binders (so that the unit's number will look good). And when she comes around all smug when our phosphorus is up a little and points to the chocolate milk my brother is having with his breakfast, I want to  He'll drink two or three sips of that milk and then we toss the rest of it. He is entitled to something a little special from time to time and I don't expect him to be given any kind of a hard time over it. She has no idea what we do outside of the unit - the unit is not a window into our lives.

[Riki]

Aharris, I know EXACTLY what you mean.  When I was getting ready to start dialysis again, I was frequently admitted to the hospital check function.  I traveled between where I lived in Charlottetown, Prince Edward Island to the hospital in Halifax, Nova Scotia by shuttle.  One day, I was getting ready to go home.  The shuttle left at 4, and supper was at 5, so I knew that I wasn't going to get another meal till I got home around 8.  Noon till 8 is a long time to go without something to eat, so I went down to the convenience store next to the cafeteria just to see if there was something that I could get to take with me. I wasn't on any kind of restrictions yet, and my favorite flavor of cihps were there, so I bought a bag.  As I was leaving, one of the doctors, who's a bit if a dick anyway, noticed the chips in my hand, and yelled to me something along the lines of, "those chips aren't good for your kidney, you know."  Totally ruined it for me.  I couldn't eat them without feeling guilty.  I went the whole ride home without eating

[kitty2010]

Perhaps I can shed some light on this thread--being a renal RD. The reason that the original poster was probably asked to speak to patients about certain things (like K and phos), is likely because many units are trying to become more "team player" oriented. The idea is that many patients get along better with their care techs than their dietitians, because they see their care techs more often, and have therefore developed a closer relationship. I have witnessed this in action. I might have a patient tell me "yeah, I'm taking my Renvela"....and then 10 minutes later tell their care tech that they never filled the prescription. I'm lied to so much, that I only believe about 50% of what I'm told by patients.

And let's face it----it seems like most dialysis patients hate dietitians anyway---we can tell!

It's funny about how much people dislike the stupid games, like bingo and whatnot. I do as well....my clinic manager has been bugging me for almost a year to put together a bingo game to do, and I keep putting it off. Not only am I just not the bingo type, I feel it would be annoying to my patients. Unfortunately, though, we often have to do certain things in order to keep our jobs.

One of these things we have to do is something I see complained about a lot within these forums: being incessantly bugged about your lab values. I have to say---this is something that we are forced to do. If I choose to not talk to you about your high phosphorus (because you don't want me to), that means I have to document that I chose not to talk to you about it, and I can be determined as being negligent. Negligence is not something a healthcare professional wants to be sucked into. Also---when you are being incessantly bugged by a dietitian, know that she probably has a physician incessantly bugging her about you.  Every single month, without fail, I have to give reasons to my physicians for every single potassium, phos, PTH, and albumin that is out of range. That is why I always ask if someone is taking their binder---so that I have an intelligent answer for the physician. Whether we like it or not---we are being held responsible for your health decisions.

Another thing that we have absolutely zero control over is the "report cards". When the corporate office says you have to use a certain print out or template to stay in compliance with corporate policies, you kind of have to do it. I apologize on behalf of all of my nutrition colleagues out there that these are so demeaning to people----but our hands are tied across the board. I think most dietitians are using a pre-made template that comes right from the computer system we have to use, so there's no changing it. If it annoys you, please don't blame it on us. Chuck it in the trash later, if you want.

Ok---stepping off my soapbox now. Just know that being a renal dietitian is actually quite a stressful job---after I do lab rounds or sit through a doctor meeting when he tells me how off goal I am for the month, I'm always thinking that opening up a bakery might prove to be a better quality of life!  No one gets mad at you when you hand them their donut.

[Riki]

I'll have a donut!  oh wait.. they're high in phosphorus....

I liked the nutritionist that I had when I was a child.  She did everything she could to make the renal diet eaiser for us kids, who are picky eaters due to our disease, besides the fact that we were kids.  We had to drink a concoction of Boost with a protein supplement, and sometimes Kayexalate to bring down potassium.  We called it 'formula' and we hated it.  I know I did.  I'd do anything I could to avoid drinking it.  She did her best to find a flavor that I could handle.  Blueberry didn't agree with me, and Banana is what I ended up with.  Luckily, I ate well enough when I was at home, that I only needed to drink it when I was in hospital, because I didn't each much then.  20 years later, I still have trouble eating things with banana flavoring

The dietitian in Halifax is pretty cool.  She tries to nudge me in the right direction, but she does know that I've been doing this for a long time, and I know what I can and can't eat.  She knows that I have a mind like a sieve and sometimes don't remember binders and other medications.  She'll call and ask, and I'll tell her the truth.  The new one, who I've met only once, and the nurses knew nothing of her until I told them

[calypso]

I can't stand that they think we are not taking the binders or not following the diet if our phosphorous is high. Newsflash the phosphate binders are not perfect! It is possible to have high phos even if you do everything right. We do have to eat after all!

[RichardMEL]

Kitty2010 - thanks for your post. I liked your insight "from the other side"

I'll say one thing for our dieticians (and I just had a new one come see me yesterday!)... without a doubt the dieticians are all absolutely gorgeous!!!!! I like seeing them from that point of view 

About not wanting to play the annoying bingo games and stuff - maybe you should try pointing your boss at a forum like this to say "Look, real patients out there just do not want this stuff!" to back up your own claims.

About having to talk to us about our labs - I think this IS responsible. It is your (the staffs) job to provide the information so we are informed. I think then it is for the patient to decide what they do (or don't do) with that information. The point is if you can show that we have been informed of the facts of our situation then you're off the hook, and we're informed. I think the line though is difficult - when does "providing information" become "hassling"(from the patients perspective)? This is SUCH a difficult topic you probably could devote an enire message board to it! I can't count the number of times I see a nurse or dietician come in and talk to a patient that either they shouldn't smoke, or they "must" be eating too much high-K foods, or not enough protein or whatever.... and perhaps the real issue is "how much is enough?"

I think this also dovetails into the "team" approach you mention - yes, it's good that everyone is across the same page, and "multiskilled"(to pull another buzzphrase out) and all hopefully present the same information (nothing worse than getting mixed information from your care team - eg: one person says food X is OK, the other doesn't, etc). The problem, from the patients POV might come in when you have a dietician telling you to do this, then your nurse/tech also telling you and so on. Specially if it's something you don't want to hear, or feel you're doing your best to control but it's not working for you, then some patients may feel harassed. That will make them defensive, and agressive towards those people.

We understand the goal is to HELP US. I know that half the staff in my unit wouldn't talk about a need to control phos or K or whatever if they didn't actually care and want us to do the best we could while on dialysis. Sometimes it all comes down to the way the message is communicated.

Luckily Sarah the dietician I saw yesterday(and boy did I enjoy seeing her  ) was pretty gentle on me, because my labs are all pretty much in range, so she was happy enough with where I am at.

Oh one thing that does frustrate me a bit is that some other dieticians I've seen over the years will come along doing the review, and say "Your labs are all great. everything's in the range you want *BUT* you could do to have some more fruit at night and an extra egg a week..." - it's like nothing we can do is good enough... I find that a bit difficult to stomach(pun intended!). I mean if my labs are out in some area then fine suggest stuff, but if everything's going OK why try and fine tune stuff? It makes ME feel like I'm still not good enough somehow.... I understand what they're doing, but it's still somehow a bit insulting to me. I know the particular one that said that didn't mean it that way, but somehow I came away feeling like all my efforts to take binders and control my diet and fluids just wasn't good enough.

[Riki]

feel you're doing your best to control but it's not working for you, then some patients may feel harassed. That will make them defensive, and agressive towards those people.

This is me, right here.  I was told when I was a child that I had something called Hungry Bone Syndrome, and because of that, it doesn't seem to matter if I take the binders or not, my phosphorus is still high and my calcium is still low.  I'm told so much that I need to take the binders that I feel that I should start taking them every hour on the hour, whether I eat or not.  It's annoying, although I do understand why they do it.  I did go through a period where I wasn't taking anything.  I owned up to it and told them the truth, that I wasn't taking anything, and I think since then they have a hard time believing me when I tell them that I am taking them now.

[caringpct]

I did it!! Our dietitian gave balloons to everyone that had their phosphorus within range so I tied balloons in my hair all day. The dietitian was happy because people would ask about the balloons and I would talk about phosphorus and the patients loved it because they got to laugh at me and my goof ball ways!!

[Riki]

That's a neat idea