New Patient Orientation is probably the most lacking in dialysis centers. As patients, too quickly we forget what it was like to enter a facility and spend the next several hours in treatment. We forget the pain and discomfort, the terror, the questions, the suspension of feelings, etc. when we began the life-sustaining process of dialysis. It seems to be a human capacity to forget traumatic events. The staff is also pretty immune to this as they’ve seen hundred of patients come and go. We patients learn quickly to wrap ourselves in a cocoon where our emotions are protected from further intrusion. We stare at a TV, sleep, or involve ourselves in some activity that allows us to pass the time. After a few weeks, we are no longer in as much terror and fear and we get through it. But we sure could have used some help during that time!
I was in the “Center from Hell” when I first started dialysis and you may already know that story. So, I don’t know what it’s like to be a new patient in a center that operates properly with a focus on patient-centered care. But I am very familiar with what it’s like to be a new patient in a center when the care is poor. I know what it’s like to feel abandoned and left to find your own way at the moment you need help the most.
In those first weeks, I recall all the activity surrounding me. I was not an easy stick. My fistula was deep and would move almost in fear of the pending needle stick. It often took several sticks by several people to get it right. The pain was often unbearable. I was careful to apply the anesthetic cream and wrap my arm in plastic before treatment. I would bear the painful prick of the Novocaine injection so that I could tolerate the smallest gauge needle. Often due to infiltration, I would go home with huge bruises on my arm that would last for a couple weeks. And even when the tech was successful, it would clot almost instantly. I can’t count the times the machine would start beeping and stop treatment due to a clot in the line. It took a while to get the proper Heparin amount to prevent clotting. Frankly, I was clueless during that time. I thought it was me and not a normal part of the initial treatment. It would have been nice if someone explained that to me. Somehow I got through that. I really don’t know how.
During the first weeks, I was often visited by one person or another. they would ask a bunch of personal questions and fill out a form, I would sign it and that would be it. Often I had no idea what i was signing. I had just been through the emotional turmoil of getting stuck several times! What was lacking was someone genuinely asking about my feelings. Yes, there was the obligatory “How are you?” question but I could have said anything in response. They weren’t listening. Not that they didn’t care, they just had a mission to accomplish, a form to fill out, and tending to me as a new patient wasn’t on the list.
What I needed in that first couple days was someone to tell me what the Hell was going on! Like a old man facing a set of steps, I needed someone to lean on and help me get to the top. I’m sure there are centers that may have a procedure whereby this happens but I’m at a loss to know which ones. I’ve talked with many patients and I’ve not found one that felt they had proper support and assistance in those first days and weeks of dialysis.
Someone described dialysis as “ten minutes of terror followed by four hours of boredom”. I can”t imagine a better description but that applies more to patients who’ve been in treatment for a while. In the first weeks, it’s four hours of terror. There are sounds and sensations that are all new and frightening, people around you that have no names, painful and frightening events that come and go without warning like blood pressure drops and passing out or nearly passing out, being tended to and then ignored. For the staff, these are all expected. For the new patient, these are all completely new.
The ESRD Network currently has a framework in place for much of the New Patient orientation. We have Network Patient Representatives, Patient Advisory Committee members, and some centers have volunteers that are not associated with the ESRD Network. On the center staff, there should be a Social Worker, Dietitian/Nutritionist, nurses, technicians, management and physician. Each should have a specific role in familiarizing new patients. We just need to make highest and best use of the framework.
I believe “New Patient Orientation” is a first step to “Patient-Centered Care” which should be the ultimate goal of every center and every support group involved with ESRD and dialysis. We really should have a procedure in place for new patients. We need to have a set of expectations that will be met when new patients walk into a center and every center should operate in a similar manner. It’s no longer acceptable to just let every center operate without a set of instructions and to allow a haphazard set of procedures for new patients. So far, we’ve let every center operate on it’s own and that’s not effective. The more patients are knowledgeable of what’s going on, the more comfortable they are. The more comfortable they are, the less terrorized they are. We can do something to reduce that terror and that is to have a very specific New Patient Orientation in place when that patient walks through the door for the first time.
You are absolutely right about the lack of orientation. I certainly don’t remember any effort at orientation at the time of my start. At my center I always see the new patients come and stare in shell-shock…the nurses don’t explain and the new ones don’t know what to ask. I find myself striking up conversations with them if they’re willing & try to explain some of it so they at least have an idea (and once you have at least an inkling,it’s easier to ask questions,too).
‘Your kidneys don’t work and this machine will do it now’…just does not cut it.
Keep up the good work & keep well!
Thanks. It’s helpful to have your input that I’m on the right track. I’m pushing for this as a project for the upcoming year by an organization I’m in. Brentwood need our help and support. Did you see my post about the initial shock?
Yes,I saw….rings uncomfortably familiar. Apparently they truly expect you to just sit there and let things happen.’Why would you need to understand any of it’ is the motto.Well,mine is,’I want to know what, when, how and with what are you doing?’ as far as healthcare goes….
Your blog rings so true. Today my father started dialysis and it happened just the way you said it would. Both my father and I were “in shock”. I remember the nurse asking me if we had any questions. My response was, “if I knew more about what was happening, I would have a question.” She smiled and went back to what she was doing. She’s seen it all before. Maybe it gets better. I can’t wait.
It does get better and I guarantee it will get better if I have to visit every center in the US and hand then a new patient checklist myself. But I’m working within the powers that be to see that we set a national standard for such a procedure that educates and informs new patients. There is a better way. Please read on and let me know what’s helpful to you. Thanks for visiting and commenting.
I just found out from my neph today that I should start dialysis so this week we’re getting the ball rolling. I had an AV fistula placed back in May. I am terrified. Reading your blogs is both good and bad for me right now. I want to know what to expect but now I’m constantly feeling anxiety about it. It’s hard to believe that when I was a teen I PAID people to pierce my body with large needles. 🙂 thanks for writing about all of this. -Bryan
I hope my posts will give you some hope that you are not alone. Many people have gone through dialysis over the last 40 years. Read my posts about “the procedure”. That may help by letting you know what to expect. I’m sorry we have to meet this way but you’ll get through this. It’s just more piercing!
You know, my dialysis center (West Plano Dialysis Center) did an amazing job with my new patient orientation. The team there truly is a family and I’ve gotten to know them pretty well. If you ever needed to visit/give them a call for your research on Patient-Centered Care, I’d highly recommend them! 🙂
Thank you for that suggestion and for recommending the clinic. We patients need to support the good clinics and get rid of the bad ones. If I have the opportunity, I will visit there.