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.