They must think we are stupid...

anurseadvocate · Mar 29, 2010

I have a few things to say. First to imply that all patients have gotten themself into this situation is wrong and as professionals we should know that some patients have taken very good care of themself and still end up on this life-saving dialysis treatment. Also, it is a fact that many clinics do not give the type of education that should be given...............you can not just hand someone a piece of paper and assume that they understand...... I hear over and over from staff, throughout the US, that they do not have time to educate patients.

For those of you who believe it is the patient's fault, or that they are non compliant, I just hope you never have to experience what they have. Also, why is the patient non compliant.. goodness that word is used so much... but what makes a patient non compliant?????? I have reviewed hundreds of surveys from all over the US and believe me there are some real problems out there..................education, delivery of care, infection control, preventable errors, etc.... and,, there are very good facilities..........with very caring staff

Viralnurse · Apr 3, 2010

we are all human beings, and when we care for a dialysis patients' we are taking care of people just like you and i. i always try to remember the golden rule, " do onto others." if we follow that one rule then we are on the right foot to begin with. when we start to pass judgements, we are on the road to destruction. wayne dyer says a lot of great things about the way humans behave, and how they should behave.

unless we walk in the shoes of our brothers and sisters, then we will never truly know what they are feeling and thinking. "a nurse advocate" says it all!

"for those of you who believe it is the patient's fault, or that they are non compliant, i just hope you never have to experience what they have. also, why is the patient non compliant.. goodness that word is used so much... but what makes a patient non compliant?????? i have reviewed hundreds of surveys from all over the us and believe me there are some real problems out there..................education, delivery of care, infection control, preventable errors, etc.... and,, there are very good facilities..........with very caring staff."

allnurses Guide · Apr 10, 2010

You people obviously don't work with these populations, because you just don't get it.

talaxandra · Apr 10, 2010

I have to say that, until I started studying health ethics I never thought about the judgement implicit in the term 'non-compliance' and until I began working with renal patients I had no idea about how restrictive a life they have. Lving within those dietary and fluid restrictions, having regular dialysis and investigations, taking literally dozens of medications a day to reduce the effects of inadequate renal function (on top of medications to treat the cause of the renal failure), missing out on full participation in cultural and other significant events, for the rest of your life, knowing that even if you're fully 'compliant' you'll never feel wholly well and will still die younger than you would have otherwise, is immensely difficult. Add to that the altered mentation known colloquially as renal brain disease, and chosing to have other priorities than strict adherence to a renal regimen is understandable.

That said, as ghillbert pointed out above, if you don't get the OP's vent. you clearly don't know the frustration of working with some of these patients.

A couple of points:

1) it's unlikely the scales were miscalibrated for this patient only, or that nobody in the unit noticed every patient massively over their dry weight;

2) this patient is not new to dialysis, and the OP notes that she has a. had eduction on the topic and b. has done this (going well over her fluid restriction) before;

3) it's insulting to the OP and her unit to think that nobody considered changes in the progression of her renal failure as a factor in her weight gain;

4) 11.6k is 11.6L of fluid, over two or three days - that's more than most people without renal failure manage, and massively in excess of the 0.5 - 1.5L restriction recommended to almost every patient in our dialysis unit;

5) there's a real difference between "I knew I drank more this weekend, but that's a big gain," and "I have no idea why I've put on that weight;" and

6) it's beyond frustrating to have a patient repeatedly present overloaded, entailing a massive increase in your workload, risk their own wellbeing, take time away from your other patients, and take no responsibiolity for their decisions.

I cared for a in-patient who needed emergency BiPAP literally every other night because he so exceeded his fluid restriction. He was always genuinely terrified, and he was always massively non-compliant with his restriction. We tried every way we could think of to get the consequences of drinking through to him - pictoral charts, physical examples, half hourly reminding, a 1:1 attendant to distract and remind him - all to no avail. He was competent and literate, and non-compliant. When he was discharged from the IP unit we got updates from the dialysis unit. His dry (ideal post dialysis) weight was 60k (132lbs); one day he presented weighing 100.5k (221lbs). I'm surprised his heart didn't explode in the chair.

And to the OP - I admire your restraint. If someone who didn't know me judged me on the basis of one vent post and told me I shouldn't be a nurse, my response would have been a lot less restrained than yours. Well done, and know that some of us get it.

anurseadvocate · Apr 10, 2010

I am wondering if you have asked the patient why she is not compliant and i hate that word 'compliant'.... why does not she restrict fluid???? that is the question and perhaps once discovered things would change.

Trauma Columnist · Apr 10, 2010

anurseadvocate just got a question: you say you aren't a patient, yet from your posting doubt you are a nurse. I like that you are a pt advocate but you don't seem to be much of a nurse advocate - just an observation.

anurseadvocate · Apr 10, 2010

TraumaRU, in all due respect -- yes, I am a nurse and yes I am a patient advocate for dialysis patients, as well as other patients. When patients do not follow their care plan (that is if the staff review such with them in detail and educate them) then one must ask "What is the reason?" Without knowing the reason, the problem of not adhering to a treatment plan does not work. Perhaps if one knows what the reason is there can be a different approach to ensure the patient gets the best quality safe care ..

Patients who are on dialysis need understanding from staff and need to be appropriately educated as related to not only their dietary restrictions, but machine workings, calculating their fluid removal, s/s to watch for that might cause pending problems, etc. Recently, I spoke about 1/3 of patients in a group. This 1/3 had not been adequately educated as to the 'dos and don'ts'. I am not saying that this patient mentioned, in question, has not been educated, I am just simply stating "Why is the patient overdrinking that could cause serious medical problems?" Is she just so thirsty that she can not resist that glass of water? There is medication for extreme thirst. Is she thirsty because she is on a sodium profile of which some believe will cause thirst, others believe not --does she eat alot of foods with sodium that would cause thirst? I am just, as stated, trying to find out why she is drinking. If the nurse knows why then maybe she can really help the patient and lessen her own frustration along with improving the quality of life.

I have found that many dialysis nurses take it to heart and personally when patients do not adhere to their treatment plan. ANd, yes patients must take responsibility and it is our responsibility to educate to ensure that adherence takes place... hope that clarifies.

Remember, we can not judge unless we walk in one's shoes because we do not know how we would act or react if we, ourselves, were put in the position that many dialysis patients are put in...................it is a major life change for many including not being able to work and the loss of income thereby living a different life style, for example.

Trauma Columnist · Apr 11, 2010

Gotcha.

I just haven't seen what you've seen.

Can I ask how long you've been in dialysis? I've only been doing this four years.

talaxandra · Apr 11, 2010

Yeah, traumarus, me too - it's only been eleven or twelve years of renal nursing for me...

anurseadvocate · Apr 11, 2010

I have been doing patient advocacy for 14 or more years but have included dialysis advocacy for about 6 years. I have had the opportunity to read hundreds and hundred of facility suvey reports from over 20 states as well as communicating with staff and patients, throughout the US. I am familiar with the good and the bad. My advocacy with nurses is to ensure that they are fully educated and trained in that area of which they work and that they have a thorough understanding of what their patients are experiencing be it dialysis or acute care, or SNFs.

talaxandra · Apr 12, 2010

Thank you for your response, anurseadvocate. I suppose my response to the OP came from an understanding of the amount of education dialysis patients in my network receive over the course of their care - they're seen several times initially and then at least twice yearly by pharmacy, nutrition and the dialysis coordinator, reviewed regularly by the anemia coordinator, and assessed on every treatment by the unit and (most importantly for continuity and expertise) the dialysis nursing staff. They have written, oral, pictoral and group education sessions, and are asked if they have questions or are confused by anything, and family can be involved in as much of this process as they and the patient want.

Despite this, a number of our patients decide against following the guidelines they've agreed, through a collaborative process, best combines good clinical outcomes with their multi-layered needs. I agree with you about the problems with judgement - regardless of situation, being a health care provider is very different from using health services, & it's very easy to view patients through eyes that place health care as the only priority and to which all else should be subordinate.

That said, I'm very uncomfortable with the flack the OP copped - this should be a safe place to vent, and I've read way more judgement of the OP in this thread than I saw in the original post. I think it's reasonable to express frustration when a patient seems to value her life less highly that we do, and who repeatedly represents with the same issue regardless of education, consequences, and investigations into the cause of the problem.

I've cared for patients who did not have sodium or glucose issues, had no change in their urine output, did not have congestive cardiac failure, were not suffering in hot weather... and still significantly exceeded their fluid restriction (11.6L in three or four days is a LOT of fluid). And in the OP's case, asking about why the patient drinks gets you nowhere when she reports that she didn't drink anything extra.

JessibeanRN · Jun 18, 2010

HDNurse,

Noncompliant patients make me want to put a gun to my own head sometimes. But seriously, as nurses we can only give them the information. It is their choice to do what they want with it. Doing what they want as in hooking themselves up to the waterhose for weekend fun. :yeah:

-Jessi