Dialysis Arrogance

Discussions for Patients, Family, and Friends HD For Patients
1

I have to admit, over the time I have been on dialysis, it continues to stun and amaze me of relative arrogance and stupidity, of the individuals working the dialysis field. You would not believe that the vast majority of individuals in this field are totally unaware of the new developments in technology for the dialysis field. In other sectors of the economy, professionals in these field are up to date and aware of the changes coming to their work lives. The lack of business knowledge of simple economics in this field is mind blowing, just simple principles.

In fact, one Nurse practioner told me that when dialysis consumers do not have the correct lab numbers, they are filed with “excuses.” Beg your pardon? Who are you to be running our lives? What is important to you, may not be important to me. Many people assume(you know what they say about that word) that their beliefs and priorites are the beliefs and priorities of everyone else. In fact, in the early 20th century, social workers decried and complained about living conditions in the cities. Yet, landlords and the tenants themselves did not agree with these conclusions of the social workers. The tenants did not want to pay the extra money or rent to have more of a luxurious living standard. The tenant was more concerned with bringing their families or relatives to the United States, obtaining a higher level of education, or saving for a business. The tenants did not value the same living standards, as did the social woker. The social worker did not stop and think about the people whose lives they were imposing their values, if the tenants really wanted to subscribe to those values, we see the same attitude in dialysis, today.

There is a way to improve the lives of people on dialysis, it is Nocturnal dialysis. Gone would be the stupid regimes of taking off huge volumes of fluid, horrible leg cramps, the kidneys work 168 hours per week, in healthy individuals. Why is this concept so difficult for these people to understand or grasp?? In fact, the dialysis patient understands these concepts quite well. Yet, the so-called “brighest among us,” are extrememly clueless. The human body is not meant to take these chemicals, day in and day out, for years, without serious side effects. Most people cannot take blood pressure or cholesterol medication for more than two years, without quitting because of side effects. With Nocturnal dialysis, gone would be the regimes of excessive medication. I do not understand why these people are not held accountable for being so wrong, for so long?

Quite honestly, I think what is being done to these people in the In-Center clinics is criminal. I was told by one of the Nurses in my clinic that if they were shut down by the state for paperwork, I would be forced to go In-Center, wrong again. I would drive to get my home treatments, sorry. This woman is ignorant of the fact that clinics have been allowed to stay open for much greater violations, read the newspapers.

It is amazing that these people think that only they are at the center of the universe and everything and everyone else do not exist. That nurse is igornant to the fact that I could go to a good home dialysis clinic very close to me, have talked to them, a number of times, and they are patient focused, unlike Davita. DaVita fails to think how their policies and actions affect the dialysis consumer.

2

Lack of respect for consumer perspectives and priorities IS frustrating, NDXUFan12, but it’s not just limited to dialysis. This type of behavior can happen in any healthcare setting. I know I’ve run into it at times with my own healthcare, and with my kids’. IMHO, the underlying problem is that U.S. (all western, actually) healthcare is based on the “medical model” (http://en.wikipedia.org/wiki/Medical_model). This approach applies treatments based on symptoms. It doesn’t generally try to get at causes. In this model:
– An illness is expected to be temporary (it will either kill you or you will be cured).
– Your “job” as a patient is to seek good care and then comply with it. There is no place for education; you are not expected to know anything. (Does this sound familiar?)
– The healthcare team’s job is to provide care.
– The goal is cure.

This model is a bad fit for chronic disease–like kidney failure–because there IS no cure. The illness is life-long once you have it. Following a regimen of meds, diet and fluid limits, and treatments is only a small part of your job, because you also have to protect your own safety and manage and report symptoms. So, your job is self-management, which is much more complex. This means you need to have a LOT of information–and the care team needs to respect your knowledge of your own body and how your treatment makes you feel. And, their job is to provide care and get you up to speed so you can self-manage well.

If we used the Chronic Care Model (http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2 to care for folks who have chronic diseases, we would make extensive patient education part of the system of care. People can’t self-manage without it. And, the model calls for “Informed, Activated Patients” to work in partnership with “Prepared, Proactive Practice Teams”. You can see how respect for you as a patient is built in to this model–while it’s NOT in the medical model.

Does this make sense? To me, this is the central problem with U.S. healthcare and the reason that our outcomes are so poor. Chronic diseases–like CKD–cause 75% of all deaths and use up 75 cents out of every healthcare dollar, but we do a very poor job with them compared to other countries, because we use the wrong model. Shifting CMS to the Chronic Care Model (which the National Kidney Disease Education Program already uses) could create the kind of “disruptive change” that Dr. Donald Berwick is looking for to improve U.S. healthcare. I plan on writing him to say so. :slight_smile:

3

Excellent post, Dori. The only other place that I have seen the arrogance that is very common in dialysis, is the government This is why government health care is such a concern for me, because I have seen this attitude for many years, firsthand. I had very serious reservations about Donald Berwick, because he does not deserve better care than people with dialysis. Many times, at the University, I heard the cry for equal care, while these people thought they deserve the best care around, while everyone else should wait in line. In fact, Teddy Kennedy was the first to advocate for HMO’s, we all know how that turned out. I find it bizarre that people who do not know much about health care, should be making these decisions for us, but, that is the very sad reality. How can individuals in the government have enough knowledge to make good and rational decisions for over 300 million people?

Comply, I have never heard of that term.

Mark

4

I do think it’s important for professionals in any field to stay up-to-date on changes in the field. I have talked with staff who label patients as “noncompliant” when many of them would never be able to follow the regimen even short-term dialysis patients are expected to follow long-term, especially in-center dialysis patients who have the most restrictive fluid and diet. The world would be a better place if people thought a little longer before they said things that might be perceived by the listener as arrogant, hurtful, or even threatening.

I think it’s important to give a different perspective to what the nurse said about paperwork, clinic closure and you having to change from home to in-center dialysis. I suspect this was an overstatement and as you say, if your clinic closed, you could switch to another that offered home dialysis. In fact, you could switch now if you are dissatisfied with your clinic. I don’t know what brought up the paperworktopic. However, if the nurse said this because you’d failed to bring in treatment sheets, it would have been better if the nurse had told you that the dialysis regulations require that facilities review a home patient’s dialysis treatment sheets every two months and maintain those treatment sheets in the patient’s medical records. When a patient chooses to do home dialysis, he/she takes responsibility for completing a treatment sheet every time dialysis is performed. Although patients often see this as a paperwork burden, if recorded fully, dialysis treatment sheets show the physician and nurse that pre-treatment checks were done, what the patient’s vital signs were before during and after treatment, how the dialysis treatment progressed, how much fluid was removed, and how the patient did during dialysis so far as symptoms.

The nurse could have told you that when a surveyor visits a clinic that provides home dialysis, he/she will ask to see a certain number of home patients’ medical records. It’s doubtful that a surveyor would recommend closure of a facility if one or a few patients did not provide 100% of their treatment sheets, however, the facility could be cited and required to develop a plan of correction to address how to overcome barriers to getting patients to provide treatment sheets. What is the bigger threat for a clinic if it does not collect treatment sheets from patients for every treatment is that if a clinic bills for dialysis for which there is no proof the patient did it, Medicare or insurance could claim that the dialysis clinic had billed fraudulently. A fraud charge is a serious offense and could result loss of Medicare funds which could cause a clinic to close. No dialysis facility wants to be accused of Medicare fraud and I’m sure patients wouldn’t want this to happen either. It’s too bad if this was the issue that the nurse didn’t provide this explanation instead of saying what he/she did.

5

Beth:

Excellent post. I found it laughable that she made those comments. I thought how dumb do you think we are? In fact, I have more education that the vast majority of the staff. The main reason that I hate flowsheets is that I am an intelligent adult. I have probably forgotten more about dialysis than these people who regulate us. I read, read, read, and read more about dialysis, each and every day. You are right, I would guess that 95-98 percent of the staff at the clinic could not follow their own treatment. I am so glad each and every day that Nephrologist is charge of these people. He is reasonable and not crazy. If I just had to deal with him and his office staff, which one of the women is a Goddess, my life would be perfect, heaven on earth.

In fact, I told the nurse at the clinic that I had done what I was told and he said, “That is a real switch.” LOL! He and I are friends, argue all of the time. I am a loud patient, in other words, I do not take garabage or trash. I am not abusive, mean, or cruel. I just adovcate for what I want or I think what is being done to someone is wrong, patient or staff. I have evidence and studies to back up what I say to the staff or it has been stated by my Nephrologist. I just repeat what he has stated, if it is a medical issue.

Again, great post. I want competition to protect dialysis patients, because I am sick of them being treated as less than human. Dialysis patients deserve life without a blasted machine.

6

Nuff said. You’re definitely better off at home.