A New Dream for Kidney Patient Education
I have worked long enough in nephrology now that I actually do dream about it sometimes! This morning, I woke up thinking about the contrast between 33 years ago and now, in terms of kidney patient education.
Don’t Educate Patients!
In the late 1980s, when I started to work in this field, patient education was actively opposed by clinic staff and corporate leads. Seriously! The rationale? Educated patients would ask questions—which would throw wrenches into the well-oiled machinery of a busy dialysis clinic. No one had time for that nonsense. Patients should just comply: come in on time, sit where they were told, stick out their arms, and tough out the treatment without complaint. Ha ha ha ha ha!
Needless to say, that approach did not work well—and, unfortunately remnants of it remain to this day. For example, we still see complaints about “difficult patients,” and we still have to do presentations at conferences and webinars for patients about How to Work Well with Your Care Team and for clinicians about “Reframing ‘Difficult’ Patient Behaviors.”
Reframing? Absolutely. Whether we realize it or not, we look at behaviors and situations through a frame of analysis that colors our impressions of what is happening and why. So, when a patient does not show up for a treatment, or, in the case of home treatments, does not return treatment flowsheets, the care team may assume that s/he is “non-compliant”—and take punitive actions.
Instead, our first response needs to be to ask what is going on. “I notice that it’s been tough for you to get your treatment flowsheets in. Everyone hates them! But, we can’t bill Medicare or your health plan for your treatments without them. Is there something that gets in the way that we can help with?” When we start from a place of curiosity rather than judgment, we can help avoid escalating our patients’ emotions—as well as our own. (Of course, connected health apps help reduce the paperwork burden when they are available. But there are any number of other challenging situations and behaviors that could go better if we approach them differently).
Back to Patient Education
Dreams tend to meander, of course, and mine did. When I made my way back to the present day, it was with some relief that at least it’s been many years since I’ve heard that we shouldn’t educate patients! We are still not where we need to be, but there are a number of hopeful signs:
There are now many studies demonstrating the efficacy of CKD patient education. A Pubmed search using the term “CKD patient education” pulled up 403 results. “Dialysis patient education:” 1,791. This information has helped the community recognize that education has tangible benefits for patients, clinics, and healthcare systems.
LDOs now offer pre-ESRD education. DaVita has KidneySmart classes; Fresenius has Kidney Care Advocates.
Transitional Care Units—first started by Dr. Chris Blagg in Seattle as “Orientation Units3—were resurrected by Dr. Robert Lockridge, Jr.4 and subsequently adopted by DaVita and Fresenius, both of whom seem to be growing their programs after a slowdown due to COVID-19.
Are we good? Well, we’re certainly better. We still need to ask ourselves whether we are teaching what people really need to know to make choices and live their lives as fully as possible—or what we think they need to know. Do we know what sequence of information is most effective? Are we designing materials that meet patients where they are, using the technology they are familiar with? Is our education written at a reading level that allows the content to make sense? Does it offer hope? Is the self-management role being made explicit? Is the information merely fact-based—or is it theory-driven and designed to change health behavior?
The real dream is that we not only educate, but we do so effectively and improve people’s lives.
Shukla AM, Hinkamp C, Segal E, Baslanti TO, Martinez T, Thomas M, Ramamoorthy R, Bozorgmehri S. What do the US advanced kidney dialysis patients want? Comprehensive pre-ESRD patient education (CPE) and choice of dialysis modality. PLoS One. 2019;14(4):e0215091↩︎
Bowman B, Zheng S, Yang A, Schiller B, Morfin JA, Seek M, Lockridge RS. Improving incident ESRD care via a transitional care unit. Am J Kidney Dis. 2018 Aug;72(2):278-283↩︎