by Gary Peterson
An important editorial appears in the May 2012 issue of the American Journal of Kidney Diseases (AJKD) entitled:
Written by a PhD from Brazil, it focuses on employment statistics and cites a great deal of data from the U.S. While the author does raise several important points, I believe she fails raise the most important issue of all.
Unknown to her and most of the people involved in dialysis care is the fact that the two largest dialysis provider corporations, Fresenius Medical Care and DaVita, have no patient employment or rehabilitation programs within their corporations. Social workers have caseloads of over 125 patients and spend almost all of their time on insurance and transportation issues. Rehabilitation, supposedly integrated into the care of each patient, has become a one-size-fits-all approach. Also, the Centers for Medicare & Medicaid Services (CMS), which oversees the quality improvement of dialysis care in the U.S., does not target increased employment and rehabilitation rates as goals.
Without pressure from CMS to increase patient employment, these large for-profit corporations have simply jettisoned these functions from their corporate structure. As a result, their Chief Medical Officers do not target increased employment and rehabilitation rates as corporate or medical goals. Any lower-ranked corporate officer, nephrologist, or nurse who tries to raise these issues will find no support… and little corporate future.
The needed research for increasing patient employment and rehabilitation in chronic dialysis care was done long ago… and was ignored. Its foremost conclusion was that a coordinated, systemic approach was essential. The effort must include the patient, nephrologist, dialysis provider, patient groups, and as well as state and federal governments. Today, no such system exists in the U.S. and, worst of all, no organization recognizes this or is trying to do anything about it.
What is the cost? Economically, it is certainly in the billions. The author of the AJKD editorial notes that in 1994, workforce nonparticipation associated with kidney failure was conservatively estimated to cost $665 million in lost productivity.2 It appears these additional societal costs of dialysis care are simply being ignored by CMS. Perhaps Congress should also examine whether other taxpayer obligations directly related to renal debilitation are also increasing ─ seemingly in step ─ with the corporations’ rising profits.
And what has been the cost medically? While there are no randomized clinical trials to support this, common sense would dictate that if a system that fails to support the most basic quality-of-life measure for working-age patients, it is also discouraging and disheartening these patients. Instead of assisting patients to maintain their jobs, sense of self-worth, and professional identities, nearly all the components of the current system work against them. When the Chief Medical Officers of the largest corporations do not value these outcomes, even discussing the relationship between extremely low employment rates and survival cannot begin and will not happen.
In my opinion, patient employment rates are the best indicators of medically-sound, well-coordinated, dialysis care systems. As Donald Berwick says, every system is perfectly designed to produce the results that it gets. It is obvious we need systemic change.
In order to rapidly increase patient employment rates, we must initially focus on helping working patients who are just beginning dialysis to remain employed. For that, we need an overall system that advocates for the patient employment at all levels ─ in the clinics, in the patient groups, in CMS, in nephrology organizations, in the R&D labs, in Congress and the state legislatures and in ─ the most powerful and influential of all ─ the largest for-profit dialysis corporations.
This entire post can be summaried in two quotes:
It is the essence of the rehabilitation process that all its parts be integrated...it is the integration of all the parts into a system that has been most notably neglected.”
- Samuel B. Chyatte, MD, Physician and Patient (from “Bridging the Barriers”)
“In order to continually improve outcomes and technology that are important to patients and taxpayers, renal replacement therapy must be synonymous with long-term patient employment and re/habilitation.”
- “1972-2012: Forty Years of Federally-funded Dialysis – A ‘Renal Debilitation’ Program that is Failing Patients and Taxpayers” (work in progress)