Why do a majority of dialysis patients so blindly go to dialysis and never....

[okarol]

The question is:
Why do a majority of dialysis patients so blindly go to dialysis and never ask a single question?

I saw this posted on a dialysis tech's twitter. I am kind of surprised by the question because I am more familiar with patients who come to IHD, seeking answers. However, when Jenna went into dialysis we really knew very little. We just understood "when the time comes she'll need to decide about hemo or PD." We did go in blindly.
Looking back, I wish we had better guidance. The nephrologist at seemed more interested in telling us things that did not prepare us, like what the function of the kidney was. That horse had already left the barn, so the information was  just a repeat presentation of what he had been saying for 3 years. I think because he cared for patients up to the point of dialysis, then sent you on your way once dialysis began, he was kind of clueless as to what Jenna really needed to know.
Hopefully people find IHD and get answers, but I suppose there will still be many patients who start the treatment and get a crash course in survival. That's how it felt for our family at the time.

[jbeany]

Because they are overwhelmed, terrified, or in total denial.  I was all of those at times.  I knew it was coming for years, and didn't start looking for info until my doc said "15%.  Time to start."  And no, the docs don't give you much info at all, nor do they encourage you to go find it.  The initial comments I got from my health care staff when I even mentioned IHD were all along the lines of "You don't reaaaalllly believe what you read on the internet, do you?"

[Desert Dancer]

I often wondered this, too, the month I was in-center. I was just horrified at how people were wheeled in, poured into their chairs and then just lay there staring blankly at nothing. Not the slightest bit of curiosity. Not "What is that?" or "What are you doing?" or even just "Why?". It utterly baffles me.

I suppose if you're blindsided with dialysis then you just might not know what questions TO ask. But geez, the word 'Why' works for a lot of things.

[greg10]

The question is:
Why do a majority of dialysis patients so blindly go to dialysis and never ask a single question?..

Because they assumed the system (doctors, nurses, clinics, drug companies) has the patient's best interest at heart, but that is often very far from the truth.  In the end, many found out that if they wanted to do it right, they have to do it themselves.


Another point is that the mental function of many renal patients could be compromised from years of uremia, and they were not thinking properly.

[Desert Dancer]

Oh, I think greg10 nailed it, on both counts.

[MooseMom]

I was diagnosed with fsgs back in 1992, and at that time, no one told me anything about ANYTHING.  Not long after that, my son began showing signs of autism, so for many years, my kidneys were the last thing I was thinking about.  Then I moved back to the US and saw a new doctor for insurance purposes, and that's when we discovered that I was CKD stage 4.  I was in shock, but I had all my wits about me.  Still, no one gave me any information, but what is even stranger was that I didn't ask for any.  Everything I've learned about dialysis I've learned online.  I know which sites give the most accurate information.  I've been seeing my neph for 6 years now, and we've never had an in depth discussion about what the kidneys do and what dialysis is all about.  But to be fair, whenever I go to my appts, I want to get out of there as soon as I possibly can; I don't hang around to ask questions that I can find the answers to online.  Of course, if I have a specific question that I deem may be unique to me, then I ask, but otherwise, stand back as I run out of there!

I have asked my neph specifically about NxStage and if he thought it would be a good option for me (he said "yes"), but other than that, we've not had any discussions about dialysis...yet.

[Desert Dancer]

MooseMom, that's another thing I noticed when I dialyzed in-center: nobody volunteered any information. The month I was there I saw the nurse sit down a grand total of twice to talk to patients about other modalities. But that wasn't even really the biggest problem. All they did was give bare bones information about each modality, i.e: that PD involved putting a tube in your stomach, but no follow up with the advantages and disadvantages of PD. So the only comparisons the patients were left to contemplate were abdominal catheter vs. needles, when they should be considering things like adequacy and outcomes.

I wonder if it's just a staffing issue; I know the nurses at that unit were swamped.

[YLGuy]

Perfect thread for what I have been thinking about the last couple of days.  I would like to compile a list of questions.  Important information you should know about your treatments.  Because I am in center HD and that is all I have done ai was thinking of the questions geared towards that. 
Run time
flow rate
dialysis filter size
sharps or buttonhole needles
needle gauge
...

[MooseMom]

The likes of DaVita and Freenesius (or however it is spelled) make soooo much money, so I don't understand why there would be a staffing problem at the majority of clinics since the majority of clinics are run by the big two.  Is it that the CEOs don't want to invest in their clinics and in their staff?

[kristina]

From my experience I ended up in hospital in August 2006 purely because I felt unwell
and I was told in a very cold matter-of-fact-way I had the last stage of ESRF
and in 6 months I certainly would be on Dialysis,
& the specialist/nephrologist said the Dialysis unit would be contacting me...(They never did...)

This came as an absolute shock. Suddenly to be told and to be confronted with the fact
that my kidneys were finally finished and I would be soon on a Dialysis-machine
was so devastating a thought that it is not surprising that I could not ask any questions.

It was a very serious and daunting prospect. Suddenly, the thought of staying alive
takes over and maybe this makes ESRF-patients focus on the life-saving treatment of dialysis.

To wash-away what the specialist has just said, and to think calmly that NO! NO! NO,
I am not going on Dialysis, I am going to fight even against the experienced suggestions of a specialist,
is a decision which seems hardly possible. At the time I knew very little about my kidneys,
I had just followed a few (vegetarian food & life-style) ideas given to me by a well-meaning Professor
back when my kidneys first failed in 1971.
 
I was then young and had no wish to study my kidneys, I just wanted to get on with my life and study.
Now, when I was told in August 2006 it was 6 months before I would be on Dialysis
I decided in my more mature years to pull-up the draw-bridge and fight,
even if this meant going against the word of specialists/nephrologists.

Being diagnosed with the last stage of ESRF is a very serious and thought-provoking point in one’s life
and maybe not everybody is in a position to take a stand against professional medical opinion.
Each of us has to work it out for ourselves and do the best we can.

At 10-12% GFR it is a bit like sitting on the fence in a strong wind.
There is no room for error, things can go quickly wrong,
and it can become complicated by other conditions.
It is frightening, and without having any experience & medical knowledge
it is made even more frightening and therefore
it is quite difficult to take things into one’s own hands and fight.

What really astounds me is the fact that there is very little or no professional medical help
to support an ESRF-patient in that fight. It seems that whenever you look-up,
standing in front of you is a kidney-specialist with a raised arm pointing to the Dialysis-unit...

Why is there not a much bigger effort concentrated on helping the poor ESRF-patient
to keep their kidneys? Even the Dieticians that I saw never knew as much about Diet as I did.

The thrust of the fight should surely come from the professional doctors who should encourage us
in every way possible to prolong our life & kidney-function, and only at the last resort,
when all is lost should they stand by us when we finally need Dialysis.

You have only got to look at all the threads on IHD to see the myriad of questions
and the terrible anxiety of patients who don’t know whether they have done the right thing or not.

So, it is not really that people just walk blindly into the Dialysis-unit,
it is more complicated than this. First of all you have to ask yourself
why don’t the doctors help us fight in a highly constructive and thought-out way?

[mm2010]

Hi everyone, this is my first dialysis related post.
I'm still a long way away from dialysis, or at least this is my hope right now, but the thought of walking in blind is simply not an option for me.  If I have been gifted with this forwarning, then I am going to be sure that I walk in prepared to discuss every setting, every reading, every number in my labs, so when my dialysis time comes, I don't need to ask routine questions.  I hope I will be analysing results, monitoring my progress, and documenting my sessions and my health.

Looking back to my first intro with the nephrologist,  I remember translating this into kidney doctor.  I have since learned that nephrologists are more like coaches than doctors of kidneys.  What should I expect from my nephrologist?  Do they teach me what kidneys are for, or do they teach me how to adapt my treatment options to maximize my quality of life?  I expect my neph to tell me what the best course of treatment is in my situation, and to pull no punches to spare my feelings. 

Maybe the more experienced can share their expectations for the neph?  My personal experience so far has been that my neph is an extremely compassionite lady, who rarely has good news for her patients, and to do this for a living must be very difficult.  After she finishes giving me her assessment from the labs, a small piece of her dies with each visit.  By the time I leave, I want to console her that its ok, I'm going to be fine.

Then again, this is all great sounding stuff for someone who has never set foot in a dialysis center.  It may all change and I'll turn into a blubbering idiot when forced to face the tech and try to take it all in.  I believe IHD is arming me for the future.  That when my time for D comes it won't be a shock, and I thank everyone in the IHD family for the compassion you all demonstrate for those of us who will be following in your footsteps in the future.

[MooseMom]

I try not to be too judgmental of doctors because it must be hard to know just exactly how to refine and relate pertinent information to individual patients.  Most docs don't have the time to get to really know their patients quickly.  I like to think I am relatively intelligent and driven, but my neph's next patient may be senile and grumpy...each of use "hear" and process information in a different way. 

My neph looks a bit like Wolf Blitzer and has the demeanour of Eeyore.  Over the years, there have been a couple of times when I have let my armour down, and he has shown signs of compassion and care.  But I don't need him to hold my hand.  I need someone competent and open-minded.  For those of you who are newer to this game, I'll mention again a book that I have found to be extremely useful.  It is "Coping with Kidney Disease: A 12 step Treatment Program to Help you Avoid Dialysis", by Mackenzie Walser, M.D of Johns Hopkins.  The main thrust of the book advocates a very low-protein diet, which frankly I tried for about 2 weeks and found it expensive and unwieldy, but the rest of the book discusses the various side effects of CKD and how to combat/prevent them.  The author gives a checklist for you to use to see if your neph's treatment plan for you is as complete as possible.  Are you anemic?  Is your bp well regulated?  Do you have symptoms such as cramps, itching, nausea or vomiting?  Are you on an ACE inhibitor?  Are your serum potassium, calcium, carbon dioxide and phos levels being monitored?  Do you have gout?  Are your C-reactive protein levels being monitored?  Are high blood lipid levels being treated?  I was really relieved to see that my neph was looking at all of these things.

I'd imagine that each patient has his own set of needs.  One patient might want more compassion than information, whereas I'm the opposite.  When I first saw my neph 6 years ago, he told me he didn't have much hope for my kidneys, but he's been able to keep me off dialysis for all this time.  There will come a time when D is inevitable, but I am grateful for my neph's aggressive treatment plan.  Like you, mm2010, once I start D, I'll be able to skip all the questions like "What do my kidneys do?" and go straight to more complex issues.

[RichardMEL]

Some good posts here and interesting questions raised. I'll just put in my two cents.

My neph is very theory oriented; he's a professor of medicine. He's very good, and very highly respected... but connecting the disease with the day to day mechanics of dialysis - it's not his thing. He could care less about what bath was being used, or the pump speeds, or more practical stuff - that's pretty much left to the dialysis staff who manage all that (and well I would add). So when I talk to him, it's not about day to day stuff, but more general longer term stuff, or anything that needs his approval, like watching hb rates and what he'd like to do with aranesp levels, and that sort of thing, or other meds management (PTH is a current concern). In terms of treatment stuff he's pretty hands off and probably wouldn't give much advice in terms of coping with the day to day issues. This is not a criticism of my particular doctor, just a recognition that his strengths lie in one area, and the other stuff is best handled by those that "live" it every day, as in the nursing staff who deal with treatment issues constantly and have a great level of understanding of that stuff.

As for the original question.. I think several posters have already identified the key issues - many patients come in and are overwhealmed, or they trust that the doctors and nurses will look after them. Some just don't seem to understand how vitally important it is (we have a newish patient currently who every session is fluid overloaded; already went to ER due to breathing problems; so the staff have been telling him each time he's drinking too much - yet he just seems to ignore it and keeps drinking. The last session I was at they basically threw up their arms in frustration and said to him well if you keep drinking like you are you'll probably have more breathing problems and end up in ER - your body, your choice). I'm not sure if that particular guy is in denial or what, but I've not noticed him asking any questions to better understand the situation he is in.

For me, I find questions increase my understanding, and knowledge IS power - in terms of power over my own situation in terms of the things I can influence. It really helps me to stick to the fluid limits, or diet when I understand why it is so important.

It is disappointing when you find folks that just don't seem to care about themselves that they just let it all happen. I guess there's any number of reasons for that.

[Bruno]

The posts and views related on this thread are most certainly not my experience so I hesitate to comment. My neph sent me to an introductory class. followed up with a further information session that my wife and I went to together. We then went on to the centre for more information before we started. Surely you were provided with introductory books, that detailed your condition, the options open to you and the procedures that would be followed?

[cariad]

I was like this the first time on dialysis. I was so angry that I just wanted to hurt people and the only way I knew how to do that was to hurt myself, threaten to hurt myself, or show that I did not have to follow their rules. Knowing about dialysis would have been something I would have fought because I think I would have interpreted it as being more like them, the doctors. I always felt like the doctors hated me (some of them certainly did not like me) and tuning a person out is perhaps the most disrespectful behaviour you can display, so I used that.

I never felt like I got any special consideration for being young. Early on, I somehow got it into my head that it was because no one could tell I was young. It was a belief I held well into adolescence.

Oh, Mark. It does sound like your nephrologist may be too sensitive for this field. My nephrologist in Cal was a sweetheart, and sometimes I would go into an exam room and there would be a big, stuffed kidney doll there and I would think 'he's just seen a child in here'. At least there is generally hope with renal patients - I cannot imagine being a St. Jude's doctor. They'd find me crying in the utility closet every day.

[RichardMEL]

Bruno - fair call.

My neph didn't do any of that stuff with me, but the renal team (dialysis co-ordinator) did - I went to a pre-dialysis information session a couple of years before I started. That was really good actually - talking about the different modalities - pd, hemo, home hemo. They showed some machines, even handed around a 15g needle (yuck, scary!) and talked about transplant, diet, meds etc. It was verygood. Later on they did a similar one just about transplant, with post-transplant patients to talk about their experiences etc - that was all very good.

As for the first day.. when I went into the unit as a virgin the staff were pretty good and went through everything, explained stuff, and were happy to answer questions. I've noticed most of the staff try to follow this way with all the new patients - but not all the time. I have found when they have time they are always happy to answer questions and explain stuff till someone understands (or appears to, anyway).

I'd also note that several of my D nurses have been very good at educating me more about the lab values and what they mean, the appropriate ranges, all about the baths and how the machine works etc - some have been very much of the belief that knowing this stuff is a good thing for patients - understanding makes for a better patient sort of thing. Some are very much "it's none of your business"- which i find surprising because stuff like that IS our business - it's OUR bodies!!! Just can't figure that attitude out - but luckily most nurses in my unit are the former sort.. and even the others now realise that when I ask about a lab result or something it's because I *do* have some understanding about what's going on and what's important, so they tend to work with me rather than against me.


All in all I've been pretty happy with the overall levels of kidney/dialysis education I've received - but most of them have come from the dialysis team rather than the neph per se.

[Hemodoc]

Hi everyone, this is my first dialysis related post.
I'm still a long way away from dialysis, or at least this is my hope right now, but the thought of walking in blind is simply not an option for me.  If I have been gifted with this forwarning, then I am going to be sure that I walk in prepared to discuss every setting, every reading, every number in my labs, so when my dialysis time comes, I don't need to ask routine questions.  I hope I will be analysing results, monitoring my progress, and documenting my sessions and my health.

Looking back to my first intro with the nephrologist,  I remember translating this into kidney doctor.  I have since learned that nephrologists are more like coaches than doctors of kidneys.  What should I expect from my nephrologist?  Do they teach me what kidneys are for, or do they teach me how to adapt my treatment options to maximize my quality of life?  I expect my neph to tell me what the best course of treatment is in my situation, and to pull no punches to spare my feelings. 

Maybe the more experienced can share their expectations for the neph?  My personal experience so far has been that my neph is an extremely compassionite lady, who rarely has good news for her patients, and to do this for a living must be very difficult.  After she finishes giving me her assessment from the labs, a small piece of her dies with each visit.  By the time I leave, I want to console her that its ok, I'm going to be fine.

Then again, this is all great sounding stuff for someone who has never set foot in a dialysis center.  It may all change and I'll turn into a blubbering idiot when forced to face the tech and try to take it all in.  I believe IHD is arming me for the future.  That when my time for D comes it won't be a shock, and I thank everyone in the IHD family for the compassion you all demonstrate for those of us who will be following in your footsteps in the future.

Dear MM2010, as both a physician and a dialysis patient, you have truly spoken both sides of the equation.  It is quite easy to forget that doctors are people too.  Patient's that do badly do have an effect on a doctor and many specialties face high mortality such as oncology.  However, the average dialysis patient in center has worse outcomes than many forms of cancer.

The two best options as far as survival are preemptive transplant or home nocturnal daily dialysis if the first option is not available.  Learn as much as you can ahead of time.  As an aside, those that are long term survivors have a common trait of maintaining their independence and decision making.  There are no guaranties with any renal replacement treatment option, but many have achieved long term survival either with optimal dialysis strategies or transplant.  The first major decision if dialysis is the choice is that of access with fistulas the best long term option.  Protecting veins on both arms is key to learning how to preserve your own life in a very real sense.  Between exercises designed to enlarge the veins and muscles to avoiding undo venopunctures and using hand veins as much as possible, even before you start dialysis if that is inevitable, you can begin to gain control of your own destiny in many ways.

The key is knowledge as in many things but most especially with dialysis.  IHD is a great place to learn and I am sure you will find many helpful people in the same situation.

[Hemodoc]

The question is:
Why do a majority of dialysis patients so blindly go to dialysis and never ask a single question?

I saw this posted on a dialysis tech's twitter. I am kind of surprised by the question because I am more familiar with patients who come to IHD, seeking answers. However, when Jenna went into dialysis we really knew very little. We just understood "when the time comes she'll need to decide about hemo or PD." We did go in blindly.
Looking back, I wish we had better guidance. The nephrologist at seemed more interested in telling us things that did not prepare us, like what the function of the kidney was. That horse had already left the barn, so the information was  just a repeat presentation of what he had been saying for 3 years. I think because he cared for patients up to the point of dialysis, then sent you on your way once dialysis began, he was kind of clueless as to what Jenna really needed to know.
Hopefully people find IHD and get answers, but I suppose there will still be many patients who start the treatment and get a crash course in survival. That's how it felt for our family at the time.

Unfortunately it is a form institutionalization leading to passivity on the part of the dialysis patient that truthfully cannot openly question treatment without fear of reprisals in many dialysis units.  Perhaps the tech should ask why so many patients act in such a manner in the first place since it is quite natural to question health providers about disease prognosis and treatment options.  I always worried more about patients who did not engage in their own treatment since they truly did not do as well as those that did in many cases.  Dialysis is a different social fabric involved in complex interactions between staff and patients with the time constraints of running the business of dialysis predominating.  Simply put, most techs are too busy to sit and answer questions with the high patient to staff ratios present in many units.  For someone that is scared to start, upsetting the tech is not a way to gain more comfort in these situations.

I have had techs that literally gave me the fear of my life and I simply didn't want them anywhere near me or my machine. Although there are many dedicated professionals in dialysis, reading through patient accounts of adverse outcomes in the units and the lack of adherence to acceptable hygiene standards is quite eye opening.  I have dialyzed in 8 different units and add two more home dialysis units to the experience and not all units are equal.  The entire issue of retaliation for speaking up is a hushed subject that few wish to discuss, unless you have been the recipient of retaliation for simply asking the staff to do what they are legally mandated to do in the first place.  Read the congressional testimony of a health care professional who developed renal failure as the result of cancer treatment and many unfortunately may be able to identify with his experiences. 

http://www.dialysisethics2.org/index.php/Information/dr-kenneth-bays-us-senate-testimony.html

I read a report earlier today written over 20 years ago looking into the psychological reactions to chronic dialysis which brings to light the fact that this is not new nor something that has not been studied.  Passivity in the dialysis unit is a complex issue but well documented and often related to the complete lack of autonomy for patients in the dialysis unit.  Hopefully things will slowly change in a positive direction, but they are slow in coming.

[Hemodoc]

Sorry, hit the wrong button.

[kitkatz]

I screamed for more information after they started me on dialysis in the hospital. I wrote a two page letter to be put into my chart.  Then membership services called and asked me if I had been given the welcome to dialysis packet.  I yelled at the lady that NO information had been given to me and I was making life and death decisions blindly.  She sent a packet over quickly. The assumption of the medical staff was that others were giving me information, yet no one was doing anything.

[GraphicBass]

I, too, have noticed those who come into the dialysis center and just stare at the wall, never interacting with the staff or asking questions. This is not my way. Admittedly, I'm new to dialysis, but not to healthcare providers, and I'm not intimated by the process or the people. They would not be able to STOP me from asking questions about everything they're doing to me or for me. (I have a hunch that a couple of weeks ago, when my fistula was created, the surgical team put me to sleep without warning just to shut me up!)

However, I have noticed that when I'm in the hospital, I revert to "hospital rules". That is, everything has to be done on their time and within their procedures, or nothing gets done. That entails a lot of patience. It's sometimes hard for me to break out of the hospital trance and become a working, alert adult again. Thank goodness my wife is usually in the room and can throw a book at me to wake me up!

I theorize that those who stare blankly at the wall have just become accustomed to "hospital rules" all the time, and have been unable to summon the energy or willpower to come back to life....

Just a thought...

gary

[woodsman]

I, too, have noticed those who come into the dialysis center and just stare at the wall, never interacting with the staff or asking questions. This is not my way. Admittedly, I'm new to dialysis, but not to healthcare providers, and I'm not intimated by the process or the people. They would not be able to STOP me from asking questions about everything they're doing to me or for me. (I have a hunch that a couple of weeks ago, when my fistula was created, the surgical team put me to sleep without warning just to shut me up!)

However, I have noticed that when I'm in the hospital, I revert to "hospital rules". That is, everything has to be done on their time and within their procedures, or nothing gets done. That entails a lot of patience. It's sometimes hard for me to break out of the hospital trance and become a working, alert adult again. Thank goodness my wife is usually in the room and can throw a book at me to wake me up!

I theorize that those who stare blankly at the wall have just become accustomed to "hospital rules" all the time, and have been unable to summon the energy or willpower to come back to life....

Just a thought...

gary

No sir they have become sheep!!!

[Nicolefish18]

I am new to dialysis considering how long a lot of other people have been on dialysis. I know when I first started dialysis in May of 2009 I knew nothing about it.  I went into it blind.  I trusted that the techs and nurses knew what was best for me.  I had no idea what a fistula was, I remember going to the appointment at the vascular center to map my veins and it wasn't until then did a nurse explain it to me.  Before that I thought they could remove it after I got a transplant.  How wrong I was.  I was 22 and didn't want a permanent bump in my arm, so if it wasn't for that nurse I would have gone through with the procedure.  My doctor at the time didn't even take the time to talk to me.  I think there is a lot wrong with the way everything works.  I feel as I was seen as just another number, my dr. I had use to have to look at my flow sheet because she didn't even know my name.  People don't ask questions because you think you are in good hands.  I did until I started my home program, switched doctors and realized all the short cuts my old dialysis center was taking.  But not everyone has those options due to insurance.  So they get stuck in dialysis centers that are under staffed and techs that are too busy texting when they think no one is looking. 

[needlephobic]

In the center I go to they get mad when you ask questions. They get mad when you watch everything they do. We are just supposed to set there and do D and take our medicine. The Neph comes in and gives me and all the other people he talks to a stupid look like he cares but don't. He beats around the bush when you ask him questions. What they need is a in center therapist  or a contact list of therapist so us newbes could have somebody to talk to like me afraid of needles was having therapy with the social worker and they changed her job description to insurance manager and sent me a letter to find help elsewhere but be happy to handle any insurance prob or travel prob i might have. I would like to have some input on my treatment Talk to social worker about the so called treatment team I was supposed to have she said she could set up a meeting but didn't think the Neph would show up. Isn't he in charge of my treatment? It just plain sucks      

[RichardMEL]

I'm so glad I was in a supportive unit who were happy to answer questions and explain what they were doing and perhaps more importantly WHY. I think when I showed an interrest some of the nurses went further and encouraged me by telling me more stuff and going through things like the potassium/calcium/phos/PTH balancing act, and how it can so easily come undone and all that kind of thing.

They all go on about you being part of your treatment team, yet how can you be part of it if you're discouraged from learning more?

My motto has always been "It's my body - who is going to care about it more than ME? I *want* to understand as much as I can"

And even now, in the new experience of transplant I am driving them crazy with similar questions - luckily they are all happy to answer in the same manner.