Independence and Self-Care: The Best First Option
Beth Ulrich, EdD, RN, CHE

I’m really glad to see what appears to be a growing trend toward more self-care and home dialysis – whether it’s peritoneal dialysis or hemodialysis. I admit that I’m biased when it comes to self-care. I believe that my own sense of desiring personal independence coupled with the experiences in my first dialysis unit combined to form my belief that, in the majority of circumstances, whatever self-care our patients can do and however independent they can be is to their advantage. 
 
Self-Care Works
Research has taught us that, to a large degree, our values are established when we first encounter a new experience, and my first dialysis experience was centered on self-care. For my first job in dialysis, I was hired to be the home training nurse and set up the home training program at an Army medical center. The first home training patient was due to begin training in 2 weeks! It was clearly a see one/do one/teach one situation, as I had never dialyzed a patient. I was fortunate to have a lot of support from the rest of the staff, and our first patient went home 2 months later.
 
The medical director of our unit believed strongly in self-care. Because we were at an Army facility, the patients knew we would care for them regardless of how much responsibility they assumed for their care. This was many years ago when we first began using larger surface area dialyzers for less time. In this case, we piggy-backed two hollow fiber dialyzers to get the desired surface area. The medical director told the patients that they could do the large surface area dialysis if they did as much self-care as possible (with the staff always available to assist if needed). The staff thought many of the patients would refuse; afterall, we had some older patients and some who were not as medically stable as others. To our surprise, they all wanted to participate. Some needed more help than others, but all of them wanted to do whatever they could. It wasn’t long before they were competing with each other – who could get set up and on the fastest, who could get better blood flow, and who could manage their dialysis with the least complications. The highlight came one morning when we were going to be visited by nursing students from a nearly college. There was also a staff meeting scheduled that morning, so I asked the patients if they would show the students around until we got back from the meeting and they agreed to do that. We returned to the unit to find that the patients had told the students that they were the staff and that they were setting up the equipment before the patients arrived. They explained the equipment and taught the students about kidney disease and dialysis. It was only when we returned to the unit that the patients confessed to the student nurses that they were the patients. Even then, it took a long time to convince the nursing students, who could not believe how much our patients knew!

It was my second home dialysis patient who taught me that we shouldn’t just select patients who would follow the rules for home dialysis and self-care. E.M. was the least-
compliant and best-adjusted patient I ever had. He wanted to do it all himself, with only a buddy for emergency back up, and he did. He pushed the envelope farther than any patient I ever had before or after him, but he knew his body and his psyche well and he balanced them to best meet his physiological and psychological needs. I was a young nurse and I tried everything to get E.M. to comply with the “dialysis rules.” I cajoled, I threatened, I pleaded – all to no avail. Then, one day, I realized that E.M. was the best- adjusted patient we had and that he was also in the best shape physically. If you met him away from the dialysis setting, you would have never known he was a patient. E.M. taught me that blind compliance isn’t a good thing and that using past compliance as an indicator of which patients would be successful at self-care eliminated some of the patients who would do the best.
Later in my career, I did research in my master’s degree program on locus of control – the theory that some people see themselves as controlling their own lives (internal locus of control) and some think what happens is mostly caused by luck or fate and is out of their control (external locus of control). In studying dialysis patients, I found that those with a more internal locus of control were better adjusted to their illness and the dialysis treatment required and also did better physiologically.

Self-Care Issues and Outcomes
Several articles in this issue of NNJ discuss issues and outcomes of self-care. They all support the concept that, where the person is able enough and stable enough, more independence and higher levels of self-care result in better outcomes. They also give credence to our patients wanting to be involved in decisions concerning their care and highlight our responsibility to ensure that their involvement not only occurs, but is actively encouraged. One only has to read the statements of the PD patients in the article by Curtin, Johnson, and Schatell or of the HD patients in the contribution by Doss to see what increased independence can achieve. Doss and Priester-Coary (in the Clinical Consult Column) also talk about the logistical and reimbursement challenges in setting up daily home hemodialysis programs.

A Battle Worth Fighting and Winning!
For me and many other nephrology nurses who “grew up” in the era when home hemodialysis and peritoneal dialysis were more prevalent, it is good to see the concepts return. We know that patients do better and that, as a result, our work with them is more rewarding. We have some battles to wage with some dialysis organizations, some nephrologists (and, yes, some of our nursing colleagues), and payors to make access to self-care available to all who desire it and to have providers assume, expect, and convey to patients who require dialysis that individuals with ESRD are capable of self-care. These battles are clearly worth whatever effort we need to put forth to win them.

Beth Ulrich, EdD, RN, CHE
Editor
E-mail: BethUlrich@aol.com