Editor - at the end of the day dialysis is a personal experience and while evidence based medicine is important, the experience of patient's and their families is really what's important. Here, Denise Eilers provides some insights.
Denise Eilers is an RN, member of ANNA, Renal Support Network, NxStage Users Board of Directors, and the Kidney End of Life Coaliton. She was also her late husband Jerry's care partner during his 25 years on home dialysis. Presently, she teaches nursing fundamentals at United Township Area Career Center and Black Hawk College located in Moline, IL and is a volunteer with Genesis Hospice in Davenport, IA.
Commentary - Denise Eilers, RN
Note: After reading Gary Peterson’s comment on this morning’s RenalWEB, I felt more than a little guilty about not commenting earlier on this series of articles. He is so very right. Dialysis is about far, far more than numbers. What follows is my very personal perspective.
One year after the ProPublica articles on dialysis, I can’t help but remember one of my late husband’s standard lines. “Thank god I’m on dialysis” was a phrase he used on several occasions. That statement may seem to fly in the face of Ms Field’s original articles as well as the current commentaries, but his outlook was undoubtedly due to his personal dialysis situation. His story warrants a bit more scrutiny.
On home hemodialysis from 1980 until his death in 2004, he worked 50-60 hours per week, played golf, helped raise our son, volunteered in the community and simply lived his life. None of that happened by chance. Instead, I believe it occurred because he and I were immersed in a culture of renal rehabilitation—way back in 1980, no less.
Home therapy is nothing new. It may be less complicated now, but home dialysis was “how it all started.” We were presented with ALL our options with the nephrologist seeking our input every step of the way. His subtle message was that home dialysis would be an excellent choice given our busy lifestyle.
In an era of thrice weekly sessions, our nephrologist regularly reminded us that we had the resources for extra treatments and that well nourished patients are healthier patients. Our training nurse emphasized from day one that we should not to let dialysis rule our life. The social worker immediately asked if we needed her to contact and educate our employers about home dialysis. We were truly part of the health team.
“How do you feel?” “How’s the golf game?” “Are you swamped at work?” Those were typical questions that my husband’s nephrologist asked at every visit. I dare say the answers told him more about my husband’s condition than a slew of lab reports.
We integrated dialysis into our busy schedule rather than letting it rule our lives. Dialysis nights became family nights or pizza evenings with friends. We worked dialysis around our work schedule and our son’s active school life. No wonder my husband was so thankful for dialysis. At the time, I didn’t consider our lives at all unusual. Now, in hindsight, I realize my husband was the epitome of the rehabilitated patient. That concept—renal rehabilitation—should be the overarching goal of care today. Every law, every rule, every study, every decision should contribute to that outcome. Every patient should be able to define quality of life in their own terms and then achieve those goals through the optimal treatment of their choice.
Because I am a nurse, I would be foolish to believe that evidence based medicine (EBM) plays no part in dialysis care. It certainly does. But….the evidence of a life well lived is more often than not in the patients’ stories.
