Point of View From a Dialysis Patient-No, It Is Not Me

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This was posted by a female, not me.

The sad and unfortunate truth is that most clinics, docs, networks etc are there for the bottom line and if they have any patient that colors outside the line, i.e., questions, is proactive, has any expectations of clean protocol etc. they are labeled and treated as lepers or worse. The quieter you are, the less you speak or rock the boat and allow them to do whatever, whenever act however they want ant treat you in any manner they want, the better of a label you will receive. Once you start to question *anything* for any reason you will be blackballed. They want robots who do not think or do for themselves, and once you start thinking and asking questions or wanting them to wash their hands, wear gloves etc. you will be labeled and in some way, some how, somewhere you *will* be retaliated against either aggressively (verbal reprimands or belittling) or non aggressively via looks, making you wait when you have cramps but making it look like an accident etc. Been there, done that repeatedly. Protect yourself by documenting *everything* on paper and if possible with recording it. I make notes of every call, conversation, date, time, person, what they said, what I said etc. I also intend using a digital recorder for all my clinic visits now as well. There are the occasional providers who are very helpful and pro patient but they are not the norm. Blessings.

What do you think?

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Specializes in Nephrology, Cardiology, ER, ICU.

Would like to see the citation for this please.

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Specializes in Dialysis (acute & chronic).

"I also intend using a digital recorder for all my clinic visits now as well."

What state is the patient from? It is my understanding that there are laws in many states that make this action unlawful if all parties involved don't give consent to be recorded.

If this patient was documenting everything in my clinic, I would make sure I was also documenting every action, comment, statement, etc that the patient does and make it part of the patients chart.

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I think the poster is attempting to state that if a patient 'rocks the boat', so to speak, e.g. being proactive, that often this results in staff retaliation against the patient -- This DOES happen and CMS has labeled such as 'bullying'. Blackballing of patients has been going on for many years, in fact, about twelve, or more years ago, at a federal level, Special Senate Hearings were held regarding involuntary discharges of patients for reasons as the poster stated. IF a patient was discharged, and this still happens, it is reality, although we hate to thing such is happening, and they want to go to another unit, often that unit is told the patient is a problem. Having worked in healthcare, as you all, for years, we all know that patients are labeled as 'trouble makers', 'problem patients', etc et.. when in fact, they might only want safe care, along with wanting to be involved in their care. The overt or covert retaliation that happens is real in many units and many patients document (writing) to show that they are being retaliated against. Often, in review of medical records, we find 'defensive documentation' -- when staff document to protect themselves, documentation is subjective not objective ---

One aspect of education and training is that staff are not adequately trained to understand what a real patient-centered model is -- for instance, many units that state they are patient-centered do not even invite a patient to a care planning meeting ---

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Specializes in Nephrology, Cardiology, ER, ICU.

Hmmm....let me see....my problem pts are ones that swear at me, threaten me with physical harm, spit on me, hit me, etc....sorry but in today's world these are "problem patients."

I'll be really frank here - if you as the pt have a complaint/concern, register it in the appropriate venue and with the appropriate people.

As a provider who takes care of >200 dialysis patients, I just don't see these things in my world. I'm not saying they don't happen, but rather that if a patient is a "problem" its usually a legitimate complaint (as listed above).

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TraumaRUs, I understand those are problem patients, but I am aware of those patients who are labeled as 'problem', 'troublemakers', etc when they bring forth concerns related to delivery of care. This is very common in dialysis facilities, througout the US. In fact, even when I worked in hospitals this happened, labeling of patients. In thirty years of working in this healthcare field, I think we all know that there are many nurses who label patients without taking a second to understand their behavior and why they are acting the way they are.. However, indeed what you explain is a problem patient and am curious what the social worker has done with these patients who are acting out behaviorally?

Recently, Robin Fields, Investigative Reporter for ProPublica, released an updated 'tracker' for patients and staff to read/view, etc. The tracker was first posted in 2010 when she did a series of articles exposing the dialysis industry. The 'tracker' of which you can obtain information on ANY facility in the US (dialysis facility reports which were NEVER available as CMS would not provide this protected information) --- infection rates, hospitalizations, days in hospital, mortality, etc. This information is valuable when patients are choosing a facility as well as informative for facility staff. Most facilities do not share this report ---dialysis facility report (not the survey/inspection report) with staff as it goes directly to CMS..

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I do not condone or do I tolerate patients who exhibit that type of behavior. Individuals who act out in that fashion are problem patients, I would agree, 100% with that statement. Yet, patients who want to be proactive in care, such as clean hands, gloves, etc, are not "problem patients." Normally, I would agree with your viewpoint about addressing abusive behavior with the proper individuals or chain of command.

However, I did have to do that in the past about an FA who yelled and screamed at me over the phone about a minor issue. I complained and it was ignored. So, I am not really sure based on experience, if that is a workable situation. I tried to address it thru the chain of command and they could have cared less. I called the Renal Network and they were worthless.

Quite honestly, having worked with individuals with physical and mentally challenges over the years, they are treated in a better fashion than individuals on dialysis.

I love the Indiana University Dialysis Unit, they are great and they are doing it in the right way, I have been very impressed. The IU unit has a sign, "My kidneys failed, not my brain." How true.

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I have found, as many others, that the ESRD Networks at not as valuable as CMS believes. I have known of many situations where they have NOT helped...

Indiana University -- was under state and national averages for mortality from 2007-2010 and the mortality vs expected was 'better than average'

First year mortality vs expected and first year mortality were both LOWER that state/national averages - considerabkly

Hospital admissions and days in hospital were also LOWER than state/federal averagets.

Infecftion - Septicemia (hospitalized with BSI) less than state/national averages 2007-2010

Access-related infections also lower 2009

Anemia control 2010 - not as good as national/state averages only 77% of patients 2010

Adequacy was GOOD

The above information is from the DFR (Dialysis Facility Report) that was just updated and released by ProPublica. (news media)

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