Blog post from Home Dialysis Central:
http://homedialysis.org/news-and-research/blog/156-unwitting-victims-or-informed-medical-consumers-how-are-dialysis-patients-viewed-by-their-nurses-and-staffUnwitting Victims or Informed Medical Consumers? How are Dialysis Patients Viewed by Their Nurses and Staff? On May 31, 2016 Nephrology News & Issues, a highly respected trade publication that reports on developments in nephrology and dialysis treatment, carried an interview with Francyne N. Rosenstock, Vice President of Business Development and Marketing for Renal Reserve entitled Reducing Dialysis Nurse Burnout. 1 Renal Reserve is a medical staffing agency specializing in supplying dialysis centers with long-term (13-week) traveling nurses and permanent RNs, licensed practical/vocational nurses, patient care technicians, registered dietitians, and social workers. They understand and deal with the causes of staff turnover at U.S. dialysis centers.
When asked if burnout is more common among dialysis nurses, compared to other specialties, Ms. Rosenstock said, "This is not a simple yes or no answer. 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. 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."
She went on to say, "Dialysis nurses know that when it comes to dialysis, death is always lurking. So the question is ‘when’ not ‘if,’ because dialysis is about delaying death, not curing the disease. In other disciplines, nurses have hope for reversing a disease, unlike dialysis nurses who know they will lose their patients eventually. This has to affect a nurse. Dialysis nurses are a special breed, compassionate and dedicated to their patients, but eventually, the gloom does contribute to burning out."
Asked if fewer nurses are choosing to go into dialysis, she said,"Yes. It is not as 'glamorous' a career as other disciplines such as ER, labor and delivery or ICU. It does not pay as well as other disciplines even though dialysis nurses are highly skilled. It’s not a 'happy' discipline because dialysis nurses are providing palliative care, not aiding in curing a patient.
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. This view is intolerable and unconscionable! And it totally ignores viable treatment options like home dialysis and kidney transplantation.
Unfortunately Ms. Rosenstock's attitude toward dialysis is not an isolated example, but is found too often among many medical professionals who work for for-profit, in-center dialysis providers. A handful of these companies dominate dialysis treatment in the U.S. There, profit takes precedence over patient care, in spite of the generally benevolent publicity these companies normally disseminate. I can't point to any formal studies or surveys indicating this attitude. (Bad news from such patient surveys would attract unwanted attention.) But continuing anecdotal evidence between patients, of whom I am one, corroborate my point. This attitude permeates an industry that 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.2
There is little argument that most dialysis nurses, and for that matter dialysis social workers, are dedicated individuals who are overworked, mired in non-nursing paper work, much of it required by insurance and government entities. Patient care suffers as a result. And patient education on effective, safer, and less-costly home dialysis is often ignored or overlooked, resulting in fewer than 11% of the 500,000+ people on dialysis in the U.S. doing home dialysis.3 This in spite of the fact that more than 90% of nephrologists, when asked, would choose home dialysis if their own kidneys failed.4
Much of it I blame on the profit motive—the biggest barrier to any significant change in the way we provide dialysis in the U.S. Ongoing consolidation among the few, large dialysis providers is not helping bring change. They are for-profit corporations built on the business model of providing a standardized treatment: one-size-fits-all. They make money by filling more chairs in their dialysis centers with more people over a limited time each day. And even with this model, their profits are being squeezed by Medicare's bundled reimbursement plan.5 Add to this Congress's reluctance to allocate adequate funds for home modality training, and change is very unlikely.6
I believe that technological advancement in the form of implantable or wearable artificial kidneys, like those being developed at the University of California at San Francisco, Vanderbilt University7 and the University of Washington8 - will finally offer kidney patients a viable alternative to the outmoded standard of 3-day-per-week, in-center dialysis, which according to Ms. Rosenstock, is like waiting for death.
Nephrology in the U.S. is particularly backward. It has been unable for decades to significantly reduce the mortality rate among new dialysis patients, which at the current of 17%, is more than double that of other advanced nations in Europe and Japan.9 Clinical trials in nephrology have for too long been overly concerned with medical process and not consumer-desired results. Those results must include core quality-of-life issues if patient health is to markedly improve.10
Research is academically driven and too often concerned with only quantifiable medical data. Narrative data—the lifeblood of American consumer business—is largely ignored. Consumers are given choices, while dialysis patients are assumed to be helpless, depressed, and uneducable.
My experience as a highly informed and involved patient includes in-center, home hemodialysis and transplantation, as well as participating on hospital quality committees, regional dialysis oversight organizations, and mentoring other patients on their treatment options. It has made me aware of the insular nature of medical practice in the United States. By that, I mean the inability and often conscious disregard to learn from other fields, like consumer marketing, on how to understand and reach patients to achieve better health outcomes at less pain and cost. Motivation is the key to changing attitudes. But you cannot motivate if you are unwilling to listen or assume you know best what patients desire most.
A positive case in point is related by Dr. Jose Morfin, nephrologist at the University of California at Davis. His early intervention staff interviews new patients in the hospital at Davis, patients who are going on dialysis for the first time. They are asked what they need most to continue to live active, useful lives. Many of his patients are laborers with large families. Most say, "I need to get back to work to support my family." They are then offered home dialysis options, which 18% freely choose and are motivated to do.11
I can cite numerous of examples of people on dialysis, many of them patient advocates like myself, who work fulltime, participate in sports and other physical activities, travel widely, raise families and enjoy life fully while accommodating their need for kidney replacement therapy. It's not rocket science; it is all about patient education and personal desire.
It's not my intention to make Ms. Rosenstock, or for that matter any other dialysis professional, the object of derision, but rather to wake them up to the reality of the new patient-centered marketplace. Change is inevitable, and the old dialysis standards will be replaced by newer technology that better serves the patient's need to live a full, active life, no matter how long that may be. Dialysis technology and therapy should accommodate the patient's lifestyle, not the other way around. Waiting for death is never a solution.
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