Last month I interviewed Francyne N. Rosenstock, vice president of Business Development and Marketing for Renal Reserve, about the causes of burnout among dialysis nurses.

“I think nursing, in general, has a higher burnout rate than other disciplines in health care because nurses are on the front lines of patient care,” Rosenstock said. “They have a connection to their patients, especially patients who they are involved with over a long period of time. Outcomes, good or bad, affect them.”

Dialysis nurses, she said, can have an especially tough time because, while dialysis extends life, it does not cure the disease. “In other disciplines, nurses have hope for reversing a disease unlike dialysis nurses who know they will lose their patients eventually,” she said.

Increasing home dialysis use and transplantation can help improve quality of life and lower mortality rates. But the truth remains that this is a fragile patient population, cared for in an industry that struggles with high mortality rates. And nurses and patient care technicians likely see the repercussions of the treatment and the disease more than anybody. They are the ones present when something goes wrong on the treatment floor, and they often are more intimately connected to patients than other members of the care team.

The patient perspective

Rosenstock’s comments on the reality of dialysis nursing earned a response from kidney patient advocate David Rosenbloom on Home Dialysis Central’s blog, KidneyViews. Rosenbloom, a kidney transplant recipient and former dialysis patient, took issue with Rosenstock’s description of dialysis as palliative rather than curative.

“So, is that the way to view dialysis: as palliative, end-of-life-treatment? If this is true—and I doubt all dialysis nurses feel this way—then we patients are all lost; victimized again, not as people who happen to have kidney failure, but as time-dated specimens with limited shelf life, like stray dogs and cats in the local animal pound” Rosenbloom wrote. “This view is intolerable and unconscionable! And it totally ignores viable treatment options like home dialysis and kidney transplantation.”

Rosenstock responded to the commentary, saying she “applauded much of Rosenbloom’s perspective.” But she added that he “makes a critical path error in assuming all renal patients share his enthusiastic indictment of the industry. Those involved in direct patient care, or in an allied company as we are, can only hope for more proactive patients like Rosenbloom.” Nurses in the dialysis field do contend with an overriding challenge at times to be optimistic about patient care, she said, and her responses were “based on our nurses’ perspectives about their clinic experiences, not a referendum of patients or a defense of the industry. Remember, nurses follow orders, so their lack of control can lead to frustrating experiences for them.”

In my time working at NN&I, I have gotten to know many people who are involved in every aspect of renal care. And I see both sides of this issue. I know how dedicated and passionate most nurses are. I know they can work impossibly long hours in highly stressful situations and often do not get the respect they deserve. I also know how frustrating it is for patients who are facing a chronic disease, are often provided little support, and are bombarded with pessimistic data in an industry that all too often can feel impersonal and paternalistic. I relate to and empathize with patients partly because at one point or another, we will all be patients. Most of us will face a chronic or terminal illness at some point. Patients represent my family, my friends, my coworkers, and me. Almost everyone I know knows someone on dialysis. Patients are not just a group of people that need to be cared for and managed, they are us.

Changing the tide

Rosenbloom writes that the dialysis industry “for too long has treated people with kidney failure as unwitting victims, not educable consumers seeking the best treatment. And it’s an attitude that encourages passivity and depression among the majority of its patients.”

I think Rosenbloom has a point. Providing more patient choice and empowering patients to control their treatment and manage their disease will not just improve the patient experience, but also the experience of everyone who treats them.