Education and End of Life in Chronic Kidney Disease

More than a half million patients are being treated for ESRD in the United States (1). Estimates suggest that more than 23 million people in the United States have earlier stage chronic kidney disease (CKD) (2). More than one third of US dialysis patients are black, a threefold overrepresentation (1,3–6). The mortality of dialysis patients with ESRD is approximately 21% annually (1). In contrast to the course of other chronic illnesses in the United States, black dialysis patients enjoy improved survival compared with white patients (1,5). This paradoxic difference is unexplained by socioeconomic status or currently identified biological factors. A reasonable hypothesis would suggest psychosocial factors underlie this dramatic disparity (7).A typical assertion in the introduction to many a press release, grant proposal, and article contains words to the effect that “the mortality rate of hemodialysis patients is unacceptably high.” For those who have served as health care workers since the 1970s, this type of statement must be taken with a grain of nephrologic salt. Before 1973, before the formulation of the administrative term “end-stage renal disease” (and before the genesis of “chronic kidney disease”), a diagnosis of uremia represented a death sentence for the patient (8,9). Enactment of a US federal entitlement for care for patients with ESRD allowed a large number of people to extend their lives, to perform useful employment, to participate in social activities, or to prepare for death. Those early, pioneering patients included few elderly patients or people with diabetes—techniques were too primitive to allow tolerable treatment for such individuals (or so it was thought). The institution of Medicare coverage removed many disparities in ESRD care (10). Since the enactment of HR-73, advances in dialytic technique, such as measurement of and increase in dosage of …