The Real Motivational Challenge

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:

The Simple Idea That Is Transforming Health Care

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:

Dialysis at a Crossroads — Part II: A Call for Action

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:

Accountable Care Organizations and ESRD: The Time Has Come

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.

Comments

[Bill Peckham]

I found this article fascinating http://youarenotsosmart.com/2012/04/17/ego-depletion/ after reading it I have come to believe that ego depletion is endemic among dialyzors.

The term they use, 'ego depletion', is a bit of an inside joke; 'will power depletion' or 'volition depletion' may be a more apt term. I think your graphical representation of dialysis care in the US is a graphical recipe for the psychic depletion that leads to poor dialysis outcomes.

The provision of dialysis should be designed for volition nourishment/volition repletion because once a dialyzor's volition is depleted the difficult becomes the impossible.

[MooseMom]

My quality of life would be vastly improved if I could get access to the many interesting articles referenced on this site and on RenalWeb, instead of having to fork over 30 bucks a pop. I'm the damn patient, and I should have free access to any information I deem to be of interest to me.

[Gary Peterson]

Bill, your concepts of ego depletion and volition nourishment/repletion go a long way in explaining what is missing in the system of dialysis care. The vocabulary and language to address this hasn’t been developed, even after 50 years of long-term renal replacement therapy. The long-established patient groups should have focused on developing this “voice” decades ago. Today, these groups are headed by non-patients who are hired for their organizational and/or political skills.

For nephrology, it seems to be a case of “if there is no data, it does not exist.” They can only focus on improving data. I believe dialysis care will see the statistical improvements that these top nephrologists are seeking only after it embraces a bigger picture of care… a holistic medical art.

MooseMom, I just want to clarify to others that RenalWEB does not charge for content and does not have any arrangements with web sites that do. That being said, if the providers want patients to become experts in their own care, perhaps they should provide access to professional medical journals as part of their services.

[LSS, RN]

I appreciate your insight. As a dialysis nurse for over 30 years working in all modalities - incenter, home hemo, home PD and acutes - I have believed for a long time that what providers may recommend for optimal outcomes is not what the majority of patients want. I have worked with HHD patients since 1983 and I have never once had an HHD patient ask for more frequent dialysis. On the contrary, they tend to be busy people with families and jobs and hobbies, and they want the flexibility to do their dialysis at the time and place that best suits them. And I would also add, that despite all of my HHD patients receiving 3/wk treatments, they all had excellent outcomes and nearly all came off HHD for transplant after an average wait of 5 years, and those that have passed away on HHD generally lived a much longer time on dialysis than most. They did not feel that more treatment (time or days) would benefit them; at least not to the degree that it would be problematic by taking even more time. I do believe more frequent dialysis should be an option, but the patient should have a say in how the treatment time is scheduled. My experience with incenter HD patients is that they almost universally do not want extra time in either days or time of treatment, and on the contrary are frequently asking if their time can be decreased. For many it is related to discomfort - having tried it I can safely say that sitting still in any chair for hours at a time is not easy, and if you have a bad back, or PVD, or are simply "antsy" it can be torture.
To sum up I would just say that we should continue to educate our patients about all modalities and discuss the benefit of increased time, but we should also use our constantly improving technology to provide the highest quality treatments using the best filters and flows, push good access - that is a huge part of a successful long-term survival, and let the patients have a voice without penalizing the caregivers and clinics. It doesn't seem appropriate to me to push an 80+ year old to do the same sort of treatment that would be maybe more appropriate for a 50 year old. Common sense has been replaced by protocols and penalties - what a shame!

[Denise Eilers, RN, BSN (& former HHD care partner)]

To LSS: I am delighted to read that so many of your patients are busy with families, jobs and hobbies. That is precisely the way it should be! However, that is not the norm. As Gary says, too many dialyzors are channeled into disability and debilitation.

I totally agree that it's about the highest quality treatment possible. I would add that the highest quality should be delivered in EVERY setting--both home and center. For centers that means meshing dialysis schedules with the individual patient's job, school, volunteer work, and family life. It means dialysis facilities open after 5 PM, nocturnal treatment, and addressing more than just the physical needs of dialyzors.

I am sure not many people are jumping up and down, gleefully begging for more time on dialysis, but many dialyzors don't realize that however well they feel on optimal thrice weekly therapy, they may feel even better on extended time. With that said, I also totally agree that what is right for one person is not always right for another.

It's all about the patient's and care partner's defining their life goals and health providers working with them to acheive those goals.

Every single person in the kidney community should be forced to read and reread your statement "Common sense has been replaced by protocols and penalties" until they "get it" and do something about it.