By Bill Peckham
I like the commentary Kevin Fowler shared on Twitter, Innovation in Chronic Kidney Disease: The Need for the Patient Voice, read the whole thing. Fowler is making a big picture case that including the patient voice in CKD care will result in better care which will result in more people able to fulﬁll their human potential even as they live with CKD. I want to drill down on his section 3 of The Patient Voice in CKD:
Patient-centered care … The Institute of Medicine 2001 Report: Crossing the Quality Chasm deﬁnes patient-centered care as ‘‘providing care that is respectful of and responsive to individual patient preferences, needs, and values ensuring that patient preferences guide all clinical decisions"
Fowler, writing from the perspective of CKD writ large, sees innovation as the answer. Patient-centered care is advanced through better transplant and dialysis tech. That sort of research is CKD research I support. However, while we hope for future innovation 450,000 Americans will dialyze incenter this week and the week after and the week after ... What does patient-centered care mean for them? What will patient-centered care mean next Tuesday at the dialysis center down the street?
What does ‘‘providing care that is respectful of and responsive to individual patient preferences, needs, and values ensuring that patient preferences guide all clinical decisions’’ mean in the context of incenter maintenance dialysis? To manifest individual patient preferences we need the patient to be the central voice in their own care. It sounds easy but in the setting of a dialysis unit there are a number of factors that alone, and in combination will squeeze the patient’s voice out of this central role.
IOM's definition of patient-centered care is meant to guide those that “provide care”, given the central role of patients in making this work we need a definition meant to guide those that receive care. The dialysis care we are striving for won't be achieved with systems alone. It won't be achieved with policies and procedures based on averages gleaned from big data. Including the voice of patient advocates and CKD stakeholders in the process will not be enough. We need something else.
In the context of dialysis (all chronic diseases?) we should talk about self-centered care. Care that reflects the centrality of the individual. The actual unique individual. This linguistic change signals that broad policies designed for the ‘average patient’ are not enough. Care that let's those with CKD live the lives they were meant to live but for their CKD is centered on the self.
Self-centered care … care that is respectful of and responsive to my preferences, needs, and values ensuring that my preferences guide all clinical decisions
Care that springs from the self, that revolves around the self. It sounds like a small difference, self-centered care vs. patient-centered care, but really it is as profound a difference as the ptolemaic system vs copernican system. The patient-centered system is the ptolemaic system, it makes the dialysis provider the central actor as patients orbit connected by the gravitational obligations of proximity. Self-centered care is the copernican system, 450,000 care systems each with a unique individual at the center, each individual orbited by renal replacement therapies that ebb and flow in prominence from year to year, over a well lived life.
Copernican dialysis, self-centered care is the level of medical care that will allow more people to rely on dialysis, even incenter dialysis and still manage to fulﬁll their human potential.