Getting Rid of "Us vs. Them" in Dialysis
It's March, which often means spring (though seemingly not this year!), and it's National Kidney Month, with World Kidney Day on March 13th. So, as a community, we focus a lot of attention on outreach to the general public to raise awareness of the risk of chronic kidney disease and, within our own community, on resources to help those other folks whose kidneys don't work. You know...the patients. But, as the Pogo cartoon said:
In 2009 in the US general population (that's us!), 26.5% or more men and 28.5% or more women had high blood pressure.1 (Only about 14% of us check our BP at least once a month, though.)2 Per the Centers for Disease Control and Prevention (CDC), 11% of American adults over age 20 have diabetes—but 27% don't know it, and, another 79 million—including me—have prediabetes.3 Not too surprisingly, then, finds NHANES: Between 1988-1994 and 1999-2002, the prevalence of reduced eGFR increased significantly, from 4.7% to 6.5% (P < 0.001).4
The reality is, we are ALL patients. Maybe we are not kidney patients—at least not today—but we are ALL patients. We all interact with the medical system and experience the power differential between providers and patients—as patients. When we change the system of care and the way we interact with people on dialysis, we can start to bring about changes in the rest of healthcare. We can speak up for ourselves the way those on dialysis try to speak up for themselves.
That's why we need to get rid of the "us vs. them" mentality that we still see far too often in dialysis. You've seen it, too. The experts with the fancy degrees are US. The "ignorant," non-compliant, or "difficult" ones are THEM.
If you still use the word "compliance" when you talk to or about dialysis consumers, you are part of the problem. (And, no, changing to "adherence" is no better.) Some synonyms for compliance:
Obedience? Really? People on dialysis don't need to obey (obedience is for dogs, not adults). They need to self-manage! They need to learn about their disease and its treatment and choose a treatment that fits their lives—not get stuck with a default option that takes away what they most value. They need to follow their treatment plans, recognize and report symptoms, and maintain their own safety. They have a job with regard to CKD—and it isn't compliance. It's so much more than that.
Think of it this way. If your kidneys failed and you needed dialysis, would you want to get treatment at the clinic you work at? Or, would you send your own mother or father there? If your answer is no, you have some work to do. Because, there, but for the grace of God go...all of us. (Not them. US.)
- Olives C1, Myerson R, Mokdad AH, Murray CJ, Lim SS. Prevalence, awareness, treatment, and control of hypertension in United States counties, 2001-2009. PLoS One. 2013;8(4):e60308
- Ostchega Y1, Berman L, Hughes JP, Chen TC, Chiappa MM. Home blood pressure monitoring and hypertension status among US adults: the National Health and Nutrition Examination Survey (NHANES), 2009-2010. Am J Hypertens. 2013 Sep;26(9):1086-92. doi: 10.1093/ajh/hpt054. Epub 2013 Apr 19.
- Grams ME1, Juraschek SP, Selvin E, Foster MC, Inker LA, Eckfeldt JH, Levey AS, Coresh J. Trends in the prevalence of reduced GFR in the United States: a comparison of creatinine- and cystatin C-based estimates. Am J Kidney Dis. 2013 Aug;62(2):253-60