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

[MooseMom]

My own personal strategy for avoiding this issue is to do dialysis at home and avoid the clinic setting as much as humanly possible.  Part of wandering blindly along comes from having had control snatched away from you, so I plan to snatch it right back.

[talker]

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.

Here we go again, with on Oldie, but Goody!

Maybe is our fault. Why? Well many of us have been there and back a dozen times. Posted here on IHD with our problems. But did I, or anyone else create a basic list of what to give ( regards what to inquire upon and ask) to a new to dialysis person after finding the IHD forum.
Yes, a Neph, RN, or primary physician was supposed to do all the above.
So just considering for a moment, only new folks here to IHD.
Creating some thing that all new to dialysis folks would / could be steered to.
1- A basic list of why one is needing dialysis
2- Fistula, graft, catheter explanation
3- Options
3-   and what ever's to create a solid source of info, as opposed to searching the forum here.
4- Problems that will / could / do arise!
So, just laying out a rough lay-out for what newbee's are not aware of to ask, because they were not aware of what dialysis involved.
Yup, is / would be a big project to tackle.
What format to use?
Yes, am rambling, but needed to start some place. Maybe is totally impractical!
Live and learn, hindsight, no one is at fault.
Interesting to see just where this type of suggestion builds up and leads to!

[cattlekid]

Check out this excellent resource....

http://lifeoptions.org/help_book

Here we go again, with on Oldie, but Goody!

Maybe is our fault. Why? Well many of us have been there and back a dozen times. Posted here on IHD with our problems. But did I, or anyone else create a basic list of what to give ( regards what to inquire upon and ask) to a new to dialysis person after finding the IHD forum.
Yes, a Neph, RN, or primary physician was supposed to do all the above.
So just considering for a moment, only new folks here to IHD.
Creating some thing that all new to dialysis folks would / could be steered to.
1- A basic list of why one is needing dialysis
2- Fistula, graft, catheter explanation
3- Options
3-   and what ever's to create a solid source of info, as opposed to searching the forum here.
4- Problems that will / could / do arise!
So, just laying out a rough lay-out for what newbee's are not aware of to ask, because they were not aware of what dialysis involved.
Yup, is / would be a big project to tackle.
What format to use?
Yes, am rambling, but needed to start some place. Maybe is totally impractical!
Live and learn, hindsight, no one is at fault.
Interesting to see just where this type of suggestion builds up and leads to!

[Michael Murphy]

I must confess I started dialysis dumb as a stump.  This was a decision on my part.  I did not want to obsess about this disease so for 15 years my strategy was to do as little as possible and as long as I felt good I intended to just ignore the problem.  The only flaw was I found the complete ignorance I started dialysis with was not a good idea.  Several weeks before I started I should have crammed and learned as much as I could have.  The good part of this strategy was from the age of 50 on I had some of the best years of my life. The down side is my first dialysis session was a horror story. I had no idea what to expect and I imagined a session that would have been like a dentist visit on steroids  Now don't get me wrong, two years prior to starting my Nephroligist told me I was close to needing dialysis and I had a fistula created.  I also talked to the nurse practitioner and got diet advise which improved my labs and delayed dialysis for 2 years.  Since I have started I now want to know as much as possible.  After visiting this site for the first time and finding out there was a fruit (star fruit ) that could possibly kill me and reading about a patient who had a needle pop out and a new tech reinserted the needle and gave home a staff infection that killed him.  That's when I began to learn enough to feel some what in control of the process.  So to sum up I feel that ignorance prior to dialysis helps keep me from obsessing about the future and after the more I know the less chance of a idiot killing me.  One of the things about my current center I love is every new tech or nurse is trained by a male nurse that,makes marine Drill Instructors look like a MaryKay salesperson,if they can survive him I am sure I can survive them.

[Charlie B53]

I've had declining kidney function for many years before it got to the point my Primary Care Dr sent me to Renal.  My Neph there help me to understand how much damage I was causing simply by taking all the meds my PCP was giving me.  So together we started reducing where I could, stopping one med outright.  BP wasn't well controlled either, we worked on that, trying different combinations of BP meds until we came upono a cocktail that was effective for me.

Neither of us were aware of how badly my work, and daily dehydration was also doing damage, so my kidney function kept declining until I started getting weak, tired, and sick.  Swollen legs weeping all the time.

Since my Mother had been on PD her last two years, or a little more, I wasn't scared a bit about starting PD and Dr agreed to get my cath placed and sent me to training.

May 2013 I started PD.  I still didn't know much about the kidney, even less how they worked and what goes wrong with them.

I never even heard of IHD until a Google search Jan 2014 after I have been on PD for about 7 months.   At first I only read, learn much from other postings.  Somewhere I found a link to Kidney School
http://kidneyschool.org/
I couldn't tell you how many hours I spent studying EVERYTHING they have. I learned far more than I ever thought anyone would ever want to know about kidneys, and myself.   Most people do not have the first clue what a kidney does other than it makes urine.  And they do''t care, it doesn't affect them as they are not bothered by reduced kidney function.

I've had some great Dr's and Nurses, but their time is limited, and you have to know enough to know what questions to ask.  When you haven't a clue, you just blindly go along.

Kidney School should be mandatory study for everyone that sees a Neph.  Workbooks, study guides, handed out to patients, taken home, homework to be completed before your next office visit to make SURE you know and understand what is happening to your bady, as well as what to expect to watch for in your near future, and your long-term care.

But I doubt if this is going to happen.  It would entail costs, and who cares enough to see a project like this through to get it started?

[Athena]

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.

I hope many people read this profoundly truthful statement about the inherent institutionalization of passivity (aka institutionalized abuse and bullying) in the dialysis/nephrology industry. This culture of abuse is something that a patient soon discovers when in the CKD stage when they start encountering the great wall of silence about their disease & what can/should be done to avert the need for dialysis. I can tell that I am being "groomed" to be a passive, meek, unquestioning patient who will just simply do as they say. Patients internalize this abuse and in turn rationalise and justify why no one is able to speak to them or given them adequate information about their disease & treatment. Time is always up when seeing a Nephrologist and it is obvious that I am being groomed to accept what little crumbs of attention I do receive. I can tell it just doesn't get better than this.

Hospitals are in fact very much like correctional institutions in many ways. They are always on the lookout for 'troublesome patients' who question or demand answers and they have ways of dealing with them. Reprisals for making complaints is very real and I have personally witnessed how this operates.

In summary, the answer to the question of why a majority of patients go into dialysis blindly is simply because that is how they have been "groomed" to be by the medical profession until then. Many people have been already medically traumatised many times before they have reached the dialysis stage and when the doctor finally proclaims it is time for dialysis, their spirits have already been broken. Of course, there is also the reality of what it means to reach ESRD as well on a physical level that impacts people ability to function cognitively and emotionally as well.

What we need is some good old fashioned whistle-blowers to uncover this institutionalised abuse. Problem is - we just ain't sexy enough for anyone to take up our cause, it seems. Maybe we just need to associate more with journalists and lawyers?

[beckums70]

I sort of had this discussion (about people not asking questions or understanding what's happening to their bodies) with my nephrologist a few months ago.  He told me that most of his patients choose HD over PD without even learning about the benefits/risks of each.  He said they hear "At home" and "no nurse" and freak out, thinking they couldn't possibly manage hooking THEMSELVES up to the cycler.  He told me that around 80% of his patients would qualify for PD at home, but they aren't interested in even hearing about how it works once they realize a nurse will not be coming to their house every day to connect them to the machine. 

I think the first step in educating patients should be to send them all to a detailed class explaining to them in detail how each modality works, the drawbacks and benefits of each, and how each one will affect their quality of life. 

My nurse told me a story about one patient who, after getting her catheter placed, cut it with scissors because she didn't realize what it was there for and the tape around it was bothering her.  What???  How did she NOT know that the catheter was being placed so she could use it to do dialysis?  Is this a matter of patients not listening or being too overwhelmed to investigate and understand what's happening, or is it a case of our dialysis providers not doing a good enough job of explaining things?

I am also blown away at the questions I find here from PD patients on basic matters that were covered very well in my PD training.  It makes me wonder if we are rushed into this so quickly that we can't process what they're teaching us, or perhaps they aren't doing a good enough job giving patients much needed information, in person and/or in writing.

[Simon Dog]

I have an excellent neph who always spends enough time with me, and answers any medical questions via email any time of the day, any day of the week (incredile service).

But, I had to get so much of the info on my own.   It was a Bill Peckham article that taught me about the different filter size, and enabled me (109kg) to ask for a filter bigger than the 160 I was started on.   And, although I met with the transplant surgeon and he explained a little about EPTS and KDPI, he omitted "since you are over 53, you will have an EPTS >20 and not qualify for prime meat".  Nobody discussed what KDPI I should accept until I asked my neph - he responded by reading a medical paper with stats on organ survival vs KDPI and then came back with a carefully considered opinion.

There was, however, an excellent pre-dialysis presentation of the various options, including the go home and die option.

[Athena]

I sort of had this discussion (about people not asking questions or understanding what's happening to their bodies) with my nephrologist a few months ago.  He told me that most of his patients choose HD over PD without even learning about the benefits/risks of each.  He said they hear "At home" and "no nurse" and freak out, thinking they couldn't possibly manage hooking THEMSELVES up to the cycler.  He told me that around 80% of his patients would qualify for PD at home, but they aren't interested in even hearing about how it works once they realize a nurse will not be coming to their house every day to connect them to the machine. 

I think the first step in educating patients should be to send them all to a detailed class explaining to them in detail how each modality works, the drawbacks and benefits of each, and how each one will affect their quality of life. 

My nurse told me a story about one patient who, after getting her catheter placed, cut it with scissors because she didn't realize what it was there for and the tape around it was bothering her.  What???  How did she NOT know that the catheter was being placed so she could use it to do dialysis?  Is this a matter of patients not listening or being too overwhelmed to investigate and understand what's happening, or is it a case of our dialysis providers not doing a good enough job of explaining things?

I am also blown away at the questions I find here from PD patients on basic matters that were covered very well in my PD training.  It makes me wonder if we are rushed into this so quickly that we can't process what they're teaching us, or perhaps they aren't doing a good enough job giving patients much needed information, in person and/or in writing.

I find it incredible that anyone should wonder how or why a dialysis patient would feel overwhelmed or overloaded with details and information about how to provide life support medical treatment to themselves at home with NO ONE to supervise them when/if things go wrong. You speak like you're a health care professional who has completely eliminated the psychological burden that any patient feels when they are responsible for their own care.

Even healthy people have bad days when they feel sick and off colour and don't feel like facing their stressful day. What happens when a dialysis patient feels unable to care adequately for themselves? Or when their electricity is suddenly cut off? Or a burglar arrives while they're hooked up? Or there's an evacuation fire drill in their apartment building? Or they come down with a flu? Or they suddenly black out? Et cetera, et cetera?

[kickingandscreaming]

I've been doing PD only since January.  Although, so far, it has been working OK, I often feel alone in the wilderness with the full brunt of responsibility for my own care.  It beats the alternative--in center hemo-- but it is not without its downside.  My PD nurse is only intermittently responsive to my attempts to communicate and get help.  My nephrologist doesn't really respond to my emails.  My RX has had to change several times in this short experience and I don't really feel that there is much guidance or help available from my team.  So I can understand why someone would not choose home dialysis.  I can also understand how someone could be overwhelmed by the whole business and go into serious denial.  It's not my style to be passive and remain ignorant.  I'm a researcher at heart and very driven to know what's going on.  But that doesn't make the process any less difficult and burdensome.

[Athena]

I've been doing PD only since January.  Although, so far, it has been working OK, I often feel alone in the wilderness with the full brunt of responsibility for my own care.  It beats the alternative--in center hemo-- but it is not without its downside.  My PD nurse is only intermittently responsive to my attempts to communicate and get help.  My nephrologist doesn't really respond to my emails.  My RX has had to change several times in this short experience and I don't really feel that there is much guidance or help available from my team.  So I can understand why someone would not choose home dialysis.  I can also understand how someone could be overwhelmed by the whole business and go into serious denial.  It's not my style to be passive and remain ignorant.  I'm a researcher at heart and very driven to know what's going on.  But that doesn't make the process any less difficult and burdensome.

K&S, you've nailed it in terms of everything that can be pitted against a dialysis patient. The nephrologist who doesn't respond to your pleas for help, the nurse who is intermittently responsive to your pleas for help. And each day being totally responsible for your life support care and being prepared to deal with anything that goes wrong. I thought it was a pathetic system only when one is a CKD patient, thinking that these guys will bounce into action when ESRD is reached - obviously not! They are as ineffective, apathetic and patient-insensitive at all times in the life cycle of the kidney patient.

And someone actually wonders why ESRD patients want to be looked after by doctors and nurses at medical facilities? That's almost like wondering why people don't choose to perform their own surgeries on themselves instead of going to see a surgeon.

[Simon Dog]

And someone actually wonders why ESRD patients want to be looked after by doctors and nurses at medical facilities? That's almost like wondering why people don't choose to perform their own surgeries on themselves instead of going to see a surgeon.

It takes a certain personality type.   Vanessa Evans (professional evangelist for NxStage) calls it "the want".

Hemo is an unusual DIY project, since the evidence suggests that the results are at slightly to significantly better than in-center (due to the 3 day/wk schedule used in the US).

But then, I'm not exactly the type to call a plumber or electrician when something breaks.

[beckums70]

I sort of had this discussion (about people not asking questions or understanding what's happening to their bodies) with my nephrologist a few months ago.  He told me that most of his patients choose HD over PD without even learning about the benefits/risks of each.  He said they hear "At home" and "no nurse" and freak out, thinking they couldn't possibly manage hooking THEMSELVES up to the cycler.  He told me that around 80% of his patients would qualify for PD at home, but they aren't interested in even hearing about how it works once they realize a nurse will not be coming to their house every day to connect them to the machine. 

I think the first step in educating patients should be to send them all to a detailed class explaining to them in detail how each modality works, the drawbacks and benefits of each, and how each one will affect their quality of life. 

My nurse told me a story about one patient who, after getting her catheter placed, cut it with scissors because she didn't realize what it was there for and the tape around it was bothering her.  What???  How did she NOT know that the catheter was being placed so she could use it to do dialysis?  Is this a matter of patients not listening or being too overwhelmed to investigate and understand what's happening, or is it a case of our dialysis providers not doing a good enough job of explaining things?

I am also blown away at the questions I find here from PD patients on basic matters that were covered very well in my PD training.  It makes me wonder if we are rushed into this so quickly that we can't process what they're teaching us, or perhaps they aren't doing a good enough job giving patients much needed information, in person and/or in writing.

I find it incredible that anyone should wonder how or why a dialysis patient would feel overwhelmed or overloaded with details and information about how to provide life support medical treatment to themselves at home with NO ONE to supervise them when/if things go wrong. You speak like you're a health care professional who has completely eliminated the psychological burden that any patient feels when they are responsible for their own care.

Even healthy people have bad days when they feel sick and off colour and don't feel like facing their stressful day. What happens when a dialysis patient feels unable to care adequately for themselves? Or when their electricity is suddenly cut off? Or a burglar arrives while they're hooked up? Or there's an evacuation fire drill in their apartment building? Or they come down with a flu? Or they suddenly black out? Et cetera, et cetera?

I was actually just relaying what a healthcare professional said to me.

I am also a PD patient (3 years and counting).  If your doctor/clinic does an adequate job of explaining how everything works, and you are open to the concept your questions are answered and your doubts put to rest.  They will not allow a person who is not able to handle the psychological aspect of self-care to do PD in the first place.  And yes, I do understand the psychological burden of being responsible for my own care, since I have been and will continue to be responsible for my care with NO CARE PARTNER.  Things can go wrong, but PD training prepares you for all of that. Nurses are on call 24/7 and you have a direct line to the dialysis cycler help line 24/7 should you run into a problem.   Your SW will make sure you have a letter to take to your electricity provider making sure that if there is a power outage your home will take priority in getting power restored and the machines have battery backup AND you have the option of doing manual exchanges, which you are also taught to do during PD training.  A nurse comes to your house to check your set up and the area you've placed your machine in to make sure it is optimal, and will even watch you hook the machine up at home before you are left on your own.  I have received tremendous support from my provider and could never have made it through the first few weeks at home without them being available when I needed them.

If a burglar arrives while I'm hooked up, I will promptly unhook myself, cap my catheter and run.  Or call the cops. Whichever comes first. 

I have come down with the flu, stomach viruses, and even had to deal with a broken leg while on PD.  I have shown both of my daughters how to hook up the machine and could talk either of them through it again if I needed their help getting connected.  Even my 9 year old could help me do it.  That's how easy it is. 

As for backing out--People back out of HD all the time.  That's a personal choice that everyone is entitled to make.

[Michael Murphy]

Two years before starting my nephrologist had me sit with the nurse practioner and she went through my options. I rejected PD for 2 reasons, I have a house in the Adirondacks near a huge lake that I go swimming in every summer, I would miss that. And for years I worked in the network control center at a major telecommunication firm, I keep a small doll with a rubber bulb and a hose, ssqeeze the bulb and Mr. Butz mooned the office.  The image the PD dicription created in my mind was Mr.  Butsz. I choose in center Hemo.  I am glad I choose that option it gets me out of the house and I enjoy interacting with the staff and my fellow inmates, or patients.  Every one is different and what works for me may not work for you.  How ever the practices nurse practitioner is still my most trusted source of info.