by Gary Peterson
Today is my birthday and if my wish comes true, the CEOs and Chief Medical Officers of the largest dialysis provider organization, as well as the officers of the largest patient organizations, will read this article from The Wall Street Journal:
And if there is one paragraph I wish they would all remember, it is this:
"Quality of life happens to be the element that is most important in motivating people to deal with an illness," says Noreen Clark, director of the Center for Managing Chronic Disease at the University of Michigan. "People aren't motivated to follow their clinical regimen if in fact it doesn't improve the way they function and get along with others and manage day to day."
At a landmark 2009 conference held in Boston, top nephrologists lamented the lack of progress in improving dialysis patient outcomes. Some of the nephrologists that participated in this conference have continued to work together to improve patient mortality, hospitalizations, and quality of life. On April 12, 2012, they published a CJASN Express article that contains their latest thinking and approaches:
To remedy these problems, the authors recommend seven areas needing focus and improvement: avoiding catheters, intensifying 3x/week treatments, managing depression/anxiety, improving ECF volume control, focusing on first 120 days, more home dialysis and transplants, and better nutrition. They concede that no randomized clinical trials exist to support many of these proposed measures.
A major AJKD article also appeared this month, also written by top nephrologists. It too calls for improving patient mortality and quality of life. Citing the results of the ESRD Disease Management Demonstration Project, it calls for the need to create organizations that specialize in the coordination of medical care for chronic kidney disease patients:
Both approaches increase and intensify medical treatment, requiring even more compliance from patients. Considering the growing importance of focusing on the patient’s definition of quality of life, is this what is needed most to improve outcomes? Is this what patients want? How many patients value quality of life over survival?
A benefit of becoming older, I am told, is being able to see a bigger picture. Perhaps it is time to consider a bigger picture, a system-wide view, that can also incorporate patients’ personal definitions of quality of life.
In trying to provide a graphical representation of this, I find it best to use a model that was developed by Ken Wilber and has been used in other fields of medicine:
|Optimal model of care||Dialysis care in U.S. today|
The balanced 4-quadrant model represents a healthcare system that is focused on patients’ definitions of quality of life, a truly patient-centered system. The unbalanced model represents what could be described as “nephrologist-centered” or “provider-centered” system.
The approaches contained in the CJASN and AJKD articles simply intensify activity in quadrants II and IV. Upon closer examination, they only pay lip service to improving quality of life. They offer little to increase the size of quadrants I and III. (Technical note: I strongly suggest that patients and patient group officers carefully investigate the ESRD Demonstration Project reports for dropout/compliance rates, definitions of “patient satisfaction,” what the patients found most valuable, and the lack of any mention of improving employment or individualized rehabilitation.)
Using a wider view that includes the approach outlined in The Wall Street Journal article, it appears to me that the biggest unrecognized problem in dialysis care today is the failure of nephrologists and providers to effectively motivate patients. By focusing almost solely on medical interventions, it has become impossible to improve the outcomes that are most important ─ and most motivating ─ for patients. Instead of asking patients “what’s the matter?,” nephrologists and providers should be asking “what matters to you?”
This is especially evident in the lack of focus on patient employment and rehabilitation in the current system of care. Forty years after federal legislation was passed that provided funding for chronic dialysis care, how many effective patient employment or rehabilitation programs exist for dialysis patients? What is the employment rate for working-age patients? The answer to these questions should be shocking to us, as they are to an ever-growing number of members of Congress.
One nephrologist appears as an author on both papers, Dr. Allen Nissenson, the Chief Medical Officer for DaVita. While DaVita's management is well known for its spirited focus on motivating employees, I would challenge Dr. Nissenson to marshal DaVita’s substantial resources to motivate the group that matters most.