Dialysis and Patient-Centered Care

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Scroll to the bottom for an update if you’ve already read this previously posted article.

I wrote previously about Patient-Centered Care (PCC)  and this will be a continuation of that topic, sort of a Part 2.  In the previous post, I wrote about the conference call hosted by Dialysis Patient Citizens where Dr. Rao spoke about a team approach to dialysis care beginning with the first stage of CKD and continuing through to ESRD and dialysis.

Then, as part of the ESRD Network 14 Conference in June 2012, the topic of Patient-Centered Care was presented by Dr. Robert Allen Bear.  I talked to several people who were very impressed with his ideas and the presentation so I looked into it and found his website.  From there, I began exploring this topic further and discovering more about it.

First, let me say how appreciative I am of Dr. Bear’s efforts on behalf of patients.  His emphasis on the full spectrum needs of the patient, and not just the immediate medical needs, is astounding.  It’s a shame that this emphasis has to be made but the fact is many of the patient needs are left out of the process and only the medical issues are attended to.  Patient-Centered Care is an attempt to bring the total patient needs into the spotlight and to engage the patient in the process.

In Dr. Bear’s blogsite, called “SorrowsReward” (after the title of his book about his experience in a Dialysis Unit) he writes about Patient-Centered Care in several installments.  In the “About” page he tells of how be looks at the Dialysis Unit as a “microcosm of humanity” and makes several good points about life in the unit including: “A fundamental truth: we are alone; a fundamental need: someone with whom to talk“.   With that perspective, he can be relied upon to offer some good insights into PCC.

But first, lets get to a good definition of Patient-Centered Care.  Although the term “patient-centered” presents the idea that the patient is at the center, that’s not really an adequate definition.  Bear makes this point: “The term PCC does not accurately describe what modern patients seek.  Patients do not want to be at “the center” of a health care construct; they want to be recognized as full partners in their care…“.  (For the complete article, click here.)  Perhaps there are better terms to describe PCC such as Patient-Involved Care but for now, let’s go with PCC.

PCC is nothing new.  It’s an idea and approach that’s been espoused for several years.  I found another blog site called “Mind the Gap” who’s author, Stephen Wilkins, MPH, writes about the gap between patient and physician and is actively doing something to narrow it.  I will write more about his contributions in a future blog.  The cartoon in this post is from his website.

So, by that definition, PCC is involving the patient as a partner in all aspects of their care and that it a radical departure from the tradition model of care.  It means changing the entire environment and approach to patient care.  Like Dr. Rao, he proposes that PCC begins with the initial diagnosis of Chronic Kidney Disease (CKD) and continues through to End Stage Renal Disease (ESRD or kidney failure) requiring dialysis.  However, both acknowledge that ESRD patients don’t always come so gradually to dialysis.  Many don’t know they have ESRD until they are in the Emergency Room and a chest catheter is placed so they can be dialyzed.  But for those who have foreknowledge of their inevitable kidney failure, PCC is an important part of treatment and that should include a lot of information, instruction, orientation and participation. As Bear puts it:  “There is an insufficient focus on patient autonomy, accountability, life satisfaction and quality; it is easier to focus on biochemical measures of quality of care”

In my case, I was diagnosed with CKD almost 10 years before I progressed to ESRD and dialysis.  However, I was never really informed of what that meant.  There were several simultaneous events that took place about the same time but I didn’t know or understand the relationship of those to CKD.  I was sent to a diabetes class which I took and walked away with little knowledge of the relationship of that disease to my kidneys.  I figured it was because I also developed diabetes about the same time.  In fact, as I write, I’m not sure if it was directly related to my CKD or not.  I also saw a nephrologist monthly and started to get my creatinine level measured and reported to me.  But, again, I had no clue what that meant and how it applied to CKD and ESRD.  I just dutifully got my blood tests and the doctor did what she did.  I didn’t know I was destined for dialysis and it was never mentioned.  So, all in all, I’m a perfect candidate for a case study of how and why PCC should be the norm in CKD cases.  As Bear points out, the biochemical measures were more a part of the process than I was as the patient.  The focus was on the test results and little was communicated to me about my condition both in the present tense and in the future.

Dr. Bear, in “Is patient-centered care an outmoded concept?” writes of the changing state of patients in the digital age. He notes that: “Today’s sophisticated health care consumer employs the Internet not only to acquire information, but also to speak, using blogs and other social media outlets” and with that happening, the clinical environment has to change, too.  He see that change as inevitable over time.

But, there are roadblocks before that change.  Again, Dr. Bear points them out in an article titled, “Barriers to Patient-Centered Dialysis Care”.  Most notable are: 1) an outmoded model-of-care  three times a week, short-run dialysis treatments, traditional staffing, and a ‘production model’; 2) an insufficient focus on patient autonomy, accountability, life satisfaction and quality; and 3) A continued focus on ‘the sick ESRD patient’.

I can certainly speak to this model-of-care from the patient perspective.  We are an object of treatment, a sick person that will be made well again, or as well as can be expected, by a dialysis treatment.  We enter the dialysis unit “sick” and leave “well”. But, the reality doesn’t fit the model, as Bear points out.  Dialysis patients are not cured with each treatment.  ESRD is a complex system including not only dialysis but also nutrition, diet restrictions, fluid control, biochemistry measurement and control, etc.  It’s much larger and more complex and it requires patient involvement.  In the current model-of-care, the patient is often left out and is “cared for” rather than involved.  Without patient education and involvement, the effectiveness of the the treatment is reduced considerably.  The only alternative is PCC where the patient is an integral part of the entire treatment process and it is not just focused on the period during dialysis.

Update 6/9/13:  Since I wrote this post about Patient-Centered Care, it was interesting that I should have some additional observations about it.  Here is one in particular…

One day while in dialysis treatment, I was handed a several page document and told I needed to sign it.  I looked at it, scanned a few of the pages, and realized this was my Annual Plan of Care!  The nurse, dietitian, social worker, and doctor had all met, discussed my case, and determined this was what I should be doing for the next year.  There was only one person left out… ME, the patient!  I’ll write about this in another blog soon.  Patient-Centered Care part 3?! 

DevonTexas © 2012

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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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