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04/26/2012

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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.

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