compliant …oooh…even the word raises the ‘hackles’ on the back of my neck…to me it is anathma !
Your job as a patient is not to comply, it is to self-manage, which you do by:
– Following your treatment plan (which you should have input into)
– Monitoring and reporting your symptoms
– Maintaining your own safety
When I started ‘this’ 25 years ago, they didn’t have ‘treatment plans’, not that anyone showed you, they just told you what to do and forced ‘compliance’ through a number of remedial (of a usually punitive nature) measures. I found myself several times on the horns of a dilema around compliance or not dialyzing… I was banned from a few units and had difficulty staying in one state do to the network of units and there ‘closing ranks policy’. I am not refering strictly to ‘medical compliance’. But in the medical community there has been a broadening and perfersion of the concept of compliance to include ANYTHING that even questions policy, medical advice, procedure. Even in an attempt ot improve. I would like to mention of few extremes: In the 90’s I was in the hospital for a necrotic major toe…I sent a message to my nephrologist asking about a certain medical procedure he was ordering. Two hours later a Psychiatrist showed up in my room. The nephrologist sent him around because I was non-compliant and questioning his orders…Of course, I threw him out of my room and changed Nephrologists.
In Columbia, SC I had a nurse who did not like my independant ways (such rare occurance…LOL) and was angry either with me or her life or whatever and she began to be angry while she handled me…BPs etc.
And I asked her not to touch me that way or get some one else…It got to the point that she refused to do either and I told her ’ If you touch me again, I will deck you!" Well dispite the fact that I’m a small person and very weak during those years’ and the head nurse agreed with me that the ‘caregiver’ in question was way out of line…the medical director insiisted on center policy regards compliance, I was dismissed from that unit and all the other company units in the area…to the point where I had to move out of the state to get dialysis. My mom was so distaught she was on the phone with Senators etc. …but the immediate demands of dialysis do not coincide well with the slow moving wheels of polictics or public policy.
I have noticed especially in the South a ‘culture’ in the dialysis community that because of the racial bias and the large black population on dialysis there, that compliance is demanded of patients and there is an unwritten rule of ‘no tolerance’ to rule breakers or the ‘trouble makers’.
Before your imaginations run wild, although I’m a loud person, I am not a loud mouth and have only used a four letter word in a unit once (nd of couse the ‘no tolerance’ tendency got me thrown out at that time, not in the South) My take on it is that they have grown up dominating a whole race of people with authortarian ways that it is second nature to the folks in the dialysis community to accept no dissention from their ‘charges’.
I’m sure there is change, but I have been only 5 years gone from the South. I believe i can characterize the attitude of too many to be patronizing and condescending and immovable authortarian.
Aside from my own issues with the institution of medicine in this country.
If you want to see racism at it’s most dramatic, visit rural units in the South
and see the disparities and facilities the black population are given as compared with the white dialysis population. I have heard things out of the mouths of Unit Managers that would have people walking sidewalks with signs. They would be shocked if you called them racists, they considered themselves very sympathetic to their charges. The reason I bring this up is that it seems a allagory for the ‘compliance’ issue in the dialysis community.
1 a : the act or process of complying to a desire, demand, or proposal or to coercion b : conformity in fulfilling official requirements
2 : a disposition to yield to others
3 : the ability of an object to yield elastically when a force is applied
I’m always 1st in line volunteering to be non-compliant. Must be my religion… The Non-Comliant Church of Non-Compliance…Non-Compliant Branch.
Ah, I see where you coming from now. I understand what your saying as I’ve seen this to in my own experiences. Sometimes staff take advantage of using that word compliance to put some patients in a bad position, especially patients who are outspoken and excercise their rights as a human being. However, I see that as an abuse to the patient which makes us wanna destroy that word compliance. It’s just bad memories even hearing that word. I think changes to policies to prevent the abuse of patients with the so called word compliance should be implemented…that’s a loop hole sitting right there which helps them strip all our human rights has got to go.
There’s compliance and then there’s safety. We all make our own decisions, but personally, I don’t think keeping a log or doing pre and post assessments is matter of “compliance” so much as it is a matter of personal safety. Hemodialysis is a necessary treatment and we accept it as it is, but it’s one that is not without its significant and potentially catastrophic risks. Those risks are increased because we do it at home.
Some will say, “Well, I’m always Ok, I never have hypotension”, etc., but, things change - body weight can drift up and down over time, mistakes can be made (even simple arithmetic mistakes), machines can malfunction, scales can malfunction, concentrates can be wrong, and other times, it’s just very useful to have a record of things.
But like I said, it’s an individual decision. I spent many years in the military and to me, keeping a log of what is going on is just second nature. Many of us here have a lot of experience with dialysis and/or a very good understanding of what we are doing, but keeping a log and following a checklist ensures that nothing is overlooked. How would you like the pilot of your airliner to skip his pre-flight checks that day because he has never crashed before?
I couldnt have said it better myself. I think that sometimes patients only see things from their point of view without trying to understand why we ask them for these things. Begging for flowsheets and tracking them down and begging for labs is the low point of my job. I actually hate it…I feel like a bill collector which is not what I went to school for. However, I understand the importance of them both. How else can we manage a patient that we see only once a month. This is the only way we can legally and safely provide these patients with this option and yet they act like we are stripping them of their dignity when we ask them for it. I dont get it…because I have a chronic condition myself. When my MD’s and nurses ask me for something I know they are doing what they need to do to care for me. Why would I withhold it from them so they can not provide the service that I am demanding? It is self defeating! We work as a team…I give you what you need so that you can give me what I need. It’s basic.
You cannot treat someone without logs, flowsheets, or labs. Having made that comment, some in dialysis have the attitude that only they and their paperwork are the only things that matter in the universe, not old parents or sick children, or anything else. At Indiana, when they forgot by accident to give my lab tubes, they told me not to worry about it or not to worry about fouling up a water test. Those tests are important to me so they can protect me. Yes, the tests are important and necessary, but IU cares more about my health than tests. I doubt the first poster is more independent or loud than me.
Occasionally forgetting is human nature. I even forget things occasionally, however, I am talking about those patients who come up with some excuse EVERY MONTH. I forgot them or I didnt have the right tubes or I fell asleep or I didnt have any blank flowsheets or I couldnt find your fax# or I forgot your email address or SOME excuse. These excuses every now and again I can understand but EVERY MONTH?! C’mon.
Home dialysis is a big responsibility and therefore may not be the best modality if you find yourself unable to keep up with the BASIC Requirements. In center dialysis take sthe burdeon off of the patient to remember labs and records and monthly appts. All these things are done for you which leaves the patient with the freedom to focus on other personal responsibilities. There is nocturnal shifts, 3rd shifts, early a.m. shifts. etc.
Im just saying it should not be home nurse vs patient or vise versa. We all have to take responsibility for our parts. Bottom line is it’s the patient’s health that is at risk.
Its a word, or certainly the phrase ‘non compliance’ which tends to raise my BP (waves from across the pond… Yep I’m still here)
The question I usually ask is. WHY? Usually I’m non compliant when I’m trying to save my skin, sort out mistakes made by staff and management… Other times I’ve seen it is commonly when other patients feel Me v them, get depressed, problems are ignored, and take on the 'why do I bother attitude… EVEN if they are well educated. All it takes is real communication to get the underlying issues solved.
Don’t get me started on “Protocol” The excuse for some staff to hide behind red tape , be a right bloody jobsworth and ignore commonsense