Dialysis Patient-Centered Care (PCC)

Last month two events took place that were very different but also very related.  One was the ESRD Network 14 Annual Conference (see here)  and the other was the quarterly Dialysis Patient Citizens  Conference Call.  Both concerned Patient Centered Care (PCC).  Since I already blogged about the ESRD meeting, this is about the Conference call that took place June 27, 2012.

The call was a presentation by Dr. Vijaykumar Rao, MD, FACP, FASN who comes with some very impressive credentials including: President of Associates in Nephrology, Assistant Professor in the Department of Nephrology of Rush Medical College, Adjunct Professor in the Department of Surgery of the Northwestern University Feinberg School of Medicine.  But it wasn’t just this that made him stand out.  It was his talk about CKD, Dialysis and the importance of Patient Education.  PCC was not his intended topic but after a few minutes of listening,  I clearly saw how his points dove-tailed into that topic.

Doctor Rao briefly spoke of the stages of Kidney disease starting with Chronic Kidney Disease (CKD) Stage 1 and progressing to stage 5 or End Stage Renal Disease (ESRD). (For more about stages of CKD see here)  He made the point that at stage 4 and as it progresses to ESRD, the patient should have a fistula surgically placed for the eventual dialysis treatment.

His greatest emphasis was on the need for patient education all along this process and the need for coordinated care from a team of people at each stage of kidney disease.  He spoke of how the patient needs to be informed of the importance of  diet, medications, exercise and fitness, blood pressure monitoring and control, diabetes and blood glucose control, phosphorus and potassium control, and symptoms of each stage of kidney failure. He said, “the patient is number one in this team.”

It is a TEAM approach that is most effective in the treatment of CKD and ESRD. The team should include nutritionist, the Primary Care Physician, the Nephrologist, the Endocrinologist, the vascular surgeon, the social worker, and anyone else involved along the way.  Together they should be educating and informing the patient about each stage and the related issues.

At CKD-1, the primary contact will probably be the patient’s primary care doctor or PCP.  With the initial diagnosis of CKD, issues of nutrition and healthcare should be discussed. Likewise at each stage, appropriate issues should be brought to the patient’s attention by the others who become part of the treatment team.  There’s no fixed schedule of what should happen at each stage… yet… but the process of educating the patient should begin and continue at each stage all along the way.

But, here is the rub… very few patients are diagnosed with CKD at stage one and progress gradually to ESRD while under the care of such a team envisioned by Dr. Rao.  Many patients enter at points along the way.  I was fortunate to be diagnosed with CKD about ten years before I entered ESRD.   But, I can tell you, my experience with education and information was never anything approaching the ideal described by Dr. Rao.  Even at CKD stage 4, I was not aware of what any of this meant and how I should be dealing with the disease.  And, I am probably not the typical patient. I am keenly aware of medical issues and have always been but when it came to my own personal, medical situation, I was clueless.

I was told very little about any aspect of my disease.   And that’s the reason for my great interest and passion on this topic.  I can’t believe how ignorant and uninformed I was.  As I progressed into ESRD, I had no clue about the symptoms of kidney failure and how I should be dealing with them.  I gradually declined in health and I was not part of any team.  I just took the medications and did what I was told.  I was never told about diet, potassium control , phosphorus control, nothing.  It was only by luck that I was able to postpone going on dialysis for almost five years when I was diagnosed with CKD stage 4.  But that involved a great deal of pain and suffering that wasn’t really necessary. If I been a part of a team as Dr. Rao described, I would have been much better off.

As Dr. Rao said, “The best patient is an educated patient”  and this blog is but one part of advancing that vision.  Over the next year (2012-2013), The ESRD Network’s emphasis will be on Patient Centered Care and I will do all I can to assist in getting it defined and implemented.  What Dr. Rao described was an ideal situation but it’s not impossible.   The first step is providing opportunities for patient education. This blog is a part of that effort.

I will share more about Patient Centered Care in the days ahead and, as I learn more about it, so will you.

( My thanks to Jessica Nagro, Director of Public Affairs at Dialysis Patient Citizens (DPC) for providing her notes of the 6/27 conference call.)

© 2012 DevonTexas

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
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