Do you as a patient feel that you are in charge of your care?

[bioya]

I have experience in dialysis in both a chain center (as everyone knows DaVita) as well as my first experience at an independent center.  I would like to know if you, as a patient, feel that you are in charge of your care and that your concerns seem to matter to staff. My question revolves around the fact that the independent centers (at least the one I worked for) seem to be more willing in my experience to work with the patient, and take the patients thoughts, feelings and concerns into their decision making process.
I am curious, if you will, to let me know if you feel you are a part of the ‘team’ or if they just listen to you, nod their head, then do what they are going to anyway.
You know, you are the chairman of the board (so to speak).  The clinics should be looking out for your best interest, doing things to make you as healthy as possible, and giving you the right amount of medications that are dosed on your most recent lab results.  But no matter what, you have the final say. Please use your right and if you feel that at some point you may not be able to voice your wishes, then designate a MPOA and put your wishes in writing. Also, make sure your MPOA has the gonads to stand up for what you want. 
You people amaze me. There is no way I could deal with dialysis. I know I am just too big of a coward. I envy your courage and determination.

[Ang]

my  dialysis  center  is  run  by  the  nurses  for  the  nurses  and  the  patients  come  a  distant  second.

[MIbarra]

I spent a year at a dialysis center that was run privately. It was awful. Most of the nurses and techs wanted you to sit down, let them hook you up, run your course, and take you off. They didn't like questions and they didn't want you bothering to learn what anything on the machine meant or did.

After getting frustrated enough at the head nurse one night, I told my husband I was NOT going to dialyze again until I was in a new center. A wonderful Davita clinic took me in immediately so I did not have to miss a treatment. I hate that I spent a year at that awful center and wasted my time when I could have been at the Davita center.

I'm not saying every Davita is as great as this. But I have been to three Davita centers and 2 were great at patient care.

[jbeany]

I'm not at a chain clinic.  I'm in control of my care, as much as I can be.  I do home hemo, which helps a lot - but my staff is willing to work with me when I want something done my way.

[flip]

I am in charge (at least until Davita takes over). I tell them what machine settings I want and have no problems.

[RichardMEL]

I am at a hospital unit.

I feel "mostly in charge" - in that most of the time the nurses treat me with respect and listen to what I have to say - from little things like a pump speed setting I want or temprature or if I want a profile set on the machine. They usually oblige when I ask for the monthly lab results... mostly I think because I think I'm about the only patient who actually ever asks and wants to know (that I've noticed anyway). I think also because I've hopefully demonstrated in the past 2 years that I take in what information I've given and have some understanding of what it all means.

There are a couple of nurses though that act differently and treat me like a bit of either an idiot or like they're in charge and you have no say. There's one, for example, who doesn't believe in using UF profiles and whenever I request one she's very quick to say no "you don't need that" and whatever (I just get one of the nice ones to do it when she's gone ).

I do realise though that I don't "know it all" (hardly!) and am always open to be educated more about things but in general I feel like I am an active member of my "team" - and that's the way it should be.. I feel it empowers me to know more about where I'm at so I can do things like look after my diet more, or make the extra effort with fluids because at the end of the day if I don't care about myself and what is going on.. then who will?

[monrein]

I feel pretty much in charge (hospital unit for now but I go today to the self=care clinic where I'll be more in charge.)  I also try to be clear with staff about how important it is for them to tell me what it is they're doing when they do it.  Young doctor last night was asking the nurse about why they had switched my dialysate and she really didn't know because she wasn't on duty when the decision had been made so I told him that it would be best to ask me since I was actually present.  I did it in a joking kind of way and he laughed and then asked me about it and said sorry for ignoring me. 

I think they need to be reminded or informed when we don't feel included in things involving our care.  I feel very respected by the staff and like you RM I try to do my part with the fluid and the diet.

[Adam_W]

I feel in control with my dialysis centre staff (100% in control of my treatments themselves). If I have a question or a concern, my nurses listen to me and make sure every thing they do is ok with me. If I need to change my dry weight or run five days instead of six for one week because of travel, surgery, etc., I ask them and they always work with me to get/change what I need. As much as I like my nephrologist, however, it's a little harder for me to feel "in control" with her. She has her ways of doing things and it's hard to get her to think otherwise. I had to practically get on my knees and beg to switch from home hemo to PD. I had to kind of exaggerate and tell her that since I'm moving, it will be 100% IMPOSSIBLE for me to do home hemo (or in-centre for that matter). It would actually be possible, but it would be a lot harder. All that being said, she did eventually see my point, and I can now switch to PD. There is always room for improvement, but I'm lucky so far. My previous centre on the other hand, well thats another story (see some of my earlier rants, uh, I mean posts).

Adam

[Simon Dog]

I find that the higher up the food chain a provider is, the more listening they do, provided you know what you are talking about.   My neph is great - I've emailed him during treatment and had an order change phoned in to the clinic before treatment was done ("doc, the filter is clotting, do I need more heparin?"); the RN's listen to my requests for fluid removal, flow rate, etc.  (450 with lines reversed on the cath); it's the techs that are problematic and are not always as willing to listed to my requests and explain they will not give me the settings I am asking for because they know better (something I would take seriously from the doc or RN).   I've also found that direct communication with the doc (emailing his iphone) may not change the ultimate decisions, but is speeds things up by a treatment or two.  If I have filter clotting on Tuesday and wait for the normal reports and rounds to filter it up to the doc it may take a few treatments for a change to be made; if I email the doc directly the change happens in time for the Thursday treatment.    When I noticed my Kt/V was a bit below the clinic goal of 1.4, I emailed during treatment asking for a 180 filter and the order was into the clinic in time for the next treatment.  (no way to get a 200 without approval from the Fresenius p&t committee, which really should stand for price&toll).   

I'm in amazement at these people who "never talk to their neph" - mine is in constant contact - heard from him via email last Fri, Sat and Sun.

[cattlekid]

I agree with being in contact with your nephrologist.  I do home hemo in an open referral clinic.  This means that although I signed off on using their protocols (DaVita), my nephrologist (who is NOT the medical director of the clinic) has to approve everything.  I appreciate this because my nephrologist and I are definitely on the same wavelength, which does not always jive with what DaVita's protocols are.  I know that ultimately, my nephrologist has my back on everything.

[Angiepkd]

I feel like I am very much an active participant in my care. I do NxStage home hemo, so I am very much in charge of my actual treatments. There are still things I rely on my HHD nurse and nephrologist for, and I don't always know the reason things are done a certain way. I can and do always ask questions which all of my care team does their best to answer.  I receive copies of my labs via the DaVita care portal as well as paper copies at my clinic visit.  So far, this has all worked well.  As my dialysis journey continues, I plan on learning as much as possible. This site has been a huge help with that!

[iKAZ3D]

my  dialysis  center  is  run  by  the  nurses  for  the  nurses  and  the  patients  come  a  distant  second.

AMEN. ESPECIALLY at a Children's Unit.