The American Dialysis Experience: How do we Create Patient Centered Care?

[Hemodoc]

The American Dialysis Experience: How do we Create Patient Centered Care?
By Peter Laird, MD

I started in-center hemodialysis in February of 2007 and entered a new world of very large needles, headaches, especially after the long weekend and severe restrictions in my diet. It has been a journey that my wife has taken with me, side by side which finally led to our decision to take my treatments home. I am one of the fortunate 1% of hemodialysis patients in America able to create my own patient centered care by being at the forefront of my health care team in the comfort of my own home. Unfortunately, we are leaving too many fellow patients behind in many units that value the payment more than the patient.  Many thoughtful, bright and caring advocates have long wondered how we can restore the focus back to the patient as the center of care, instead of the business as usual we see in all too many American dialysis units today.  Where do we begin?

Looking at these issues over the last three years not only as a physician but as a dialyzor, I believe we are on the verge of a confluence of trends coming together in rapid fashion that could dramatically change the American dialysis experience very quickly. Focussing on this convergence may yield the greatest rewards in our collective efforts. Categorizing these trends into the framework of Alignment, Avoidance and Enforcement is helpful:

A) ALIGN:

    1) The Historical Application:  Pioneers of dialysis used rehabilitation as the marker of patient treatment outcomes with more dialysis applied when patients were unable to return to work and life activities.

    2)  Market Forces: Competition among FMC, Baxter, NxStage and others for the home Hemo market will be fierce.  We should align with these forces that will utilize intensive campaigns to increase patient demand for these new machines, thus expanding the home hemodialysis market.

    3)  Bundle: Align and Reduce per capita health care costs of dialysis by increased utilizing of self-care and home dialysis modalities.

    4)  Conditions for Coverage, 2008:

            Rehab Elements already in place in the regulations.
            Mental Health already part of Medicare Part A, B and D
            Mental Health evaluations already mandated in the CfC’s
            Informed Consent Mandated in the CfC’s
                    Legally Required
                    Malpractice potential for not adhering to these regulations

5)  Medical literature:       

            Current literature supports more frequent and longer duration dialysis, once again in accord with the original data from the pioneering days of dialysis in the 1960's. FHN and other studies are converging upon a unified approach to optimal dialysis best summarized years ago in the Scribner-Oreopoulos Hemodialysis Product. Duration of dialysis together with frequency of dialysis gives us the best measurement of expected outcomes.

6) Focus on CQI driven reviews of current practices to eliminate medical errors and iatrogenic conditions in dialysis centers.

7) Reduce unnecessary admissions and readmissions by adhering to best dialysis practices learned in the last fifty years of this lifesaving treatment.                       

 B) AVOID:

 1)  Avoid Re-use of Artificial Kidneys.

2)  Avoid High Ultrafiltration Rates greater than 10mL/hr/kg.

3)  Avoid Sodium Modeling.

4)  Avoid Short Dialysis Times less than 4 hours for thrice weekly hemodialysis .

5)  Avoid Catheter Use, especially new onset dialysis patients by early referral for fistula placement.

6)  Avoid the long weekend, support Every Other Day (EOD) petition.

7)  Avoid Late Referrals:

            Improve education of Primary Care Physicians and Patients to optimize referals to Nephrology in a more timely manner.

 C) ENFORCE:

 1)  Annual Dialysis Inspections - State and Federal level

            QIP
            CfC’s 2008
            Bundle

This will need state legislative or congressional action for enforcement regulations of existing statutes.  We already have many excellent regulations and statutes in place, but there are no effective inclusions of true enforcement language in these regulations.

This is my own short list of actions that would restore patient centered care to the American dialysis experience that is only afforded to the smallest percentage of dialyzors. As we move forward with the emerging postitive trends in the market place, I for one do not want to leave anyone behind. With worse survival statistics than breast cancer, prostate cancer and HIV, the American dialysis patient is a vastly underserved population not because of lack of resources, but because of the lack of patient centered care that would actually be cost saving as well.

http://www.hemodoc.com/2011/01/the-american-dialysis-experience-how-do-we-create-patient-centered-care.html

[MooseMom]

Hemodoc, do you (or anyone else) have any idea how many dialyzors in the US could successfully switch from inclinic hemo to home hemo if given the opportunity, training and support?  You talk about expanding the home hemo market and increasing patient demand...do we have any studies that might show us what percentage of the dialysis population should ideally be dialyzing at home?

[Hemodoc]

Hemodoc, do you (or anyone else) have any idea how many dialyzors in the US could successfully switch from inclinic hemo to home hemo if given the opportunity, training and support?  You talk about expanding the home hemo market and increasing patient demand...do we have any studies that might show us what percentage of the dialysis population should ideally be dialyzing at home?

Dear MooseMom, that is a matter of great debate by many folks here in America and over seas.  If you look at New Zealand, at present they have about 25% on Home Hemo modalities which is the largest such national population at present.

Bill Peckham notes that the North West Kidney Center has many programs that seek to increase home hemo, but only about 5% take advantage of this option.  They even offer patients two weeks of daily dialysis in-center to give patients a direct experience with the benefits of home dialysis .  Even at such a progressive unit as the NKC, they have difficulty opening the doors of home hemo to their patients.

[MooseMom]

Why do you think there is such a low uptake on home hemo/more frequent dialysis in this country?  Does the NKC have any explanation?

[Hemodoc]

Why do you think there is such a low uptake on home hemo/more frequent dialysis in this country?  Does the NKC have any explanation?

There are many barriers to home hemodialysis not the least of which is lack of true informed consent for the majority of patients.  Likewise, in America, there is a dichotomy between dialysis and transplant whereas in many other nations, they utilize them in a broad continuum of care.  Here in America, they are competing not complimentary interests promoted by many groups that only promote renal transplant.  Patients start this journey with the only hope of the "gift of life" on their minds.  Sadly, many do not live the 7-8 years or more for transplant and languish hopelessly in dreadful in-center conditions holding onto that elusive hope which never comes for many.

Fear of needles likewise keeps many from self cannulation.

Many studies have shown other barriers, but the bottom line is few patients take control of their own care.  Instead, they become quite passive and don't question their providers.  It truly is a sad state of affairs.

[MooseMom]

Whenever I express my fears of dialysis, my own husband tells me that it is "only a bridge" until I can get a transplant.  That makes me really angry, and I ask/yell, "So what am I supposed to do for the years I will have to wait for the transplant that you seem so damned sure is just around the corner?"  The answer to that is "take care of myself as well as I can", and that translates into getting the best dialysis I can get which, right now at least, seems to be home hemo.  I don't think patients on the waiting list fully understand that a lot of work has to be done to keep your body in good enough shape for those years in question.  I have seen several people here on IHD have trouble staying on the list after 4 or 5 years of standard D because their treatments have sadly resulted in cardiac difficulties that prove exclusionary.  You can't just sit there and rely on nothing but hope.  There's work to be done if you want a transplant.  So that dichotomy of which you speak is harmful.  Maybe that should be part of "informed consent".

There are plenty of things that I fear about dialysis, but needles isn't one of them.  I don't know why.  I fear disability AS A RESULT OF DIALYSIS much more than I fear needles.

[tyefly]

  I  think we have to remember that this behavior is not only in Dialysis....it everywhere..... in business in all aspects.   This seems to be our culture...  Everyone is out for their selves....    Dialysis clinic want to make as much profit as possible..... and people who do dialysis what as little time or involvement as possible.... they want their profit too.. and that profit is time away from doing dialysis....

  I like the idea of people like Hemodoc and MM believe in change and are very involve with their ideas of what is the best for them along with others.... we need people like this.....  I am a business owner.... and I like to make a profit....  My employee's want to make a profit too....  and it goes on.... we all have to make a profit for something...to either pay for health care  or medications  or dialysis.... we all need something and we have to do what it takes to make it happen....

  I look forward  to positive change....  with many things....    We all need to get involved with something , anything that will help better ourselves...   I think that is why we are here at IHD....  to do both....to help others and ourselves.....

[MooseMom]

I don't imagine it is easy to combine work with dialysis, so I can understand why someone would want to commit as little time as possible to it.  But that mindset usually means that you won't be healthy enough to work.  Too little time means too little dialysis, and that means more disability.  If you don't work, then you'd at least want to be well enough to enjoy life, and this is possible only if your free time off dialysis isn't spent recovering from dialysis.  Again, lessening the time burden of dialysis is desireable, and if more people had access to nocturnal dialysis, wouldn't that be grand!

There is nothing wrong with wanting to make a profit, but maybe we need to examine what we DO with that profit.  If the big dialysis providers were to take their monumental profits and plow it back into their businesses and expand their services, ie make available every other day dialysis, offer incenter nocturnal dialysis and expand their home dialysis programs, then I would love to see them make a shedload of money.

[Hemodoc]

I don't imagine it is easy to combine work with dialysis, so I can understand why someone would want to commit as little time as possible to it.  But that mindset usually means that you won't be healthy enough to work.  Too little time means too little dialysis, and that means more disability.  If you don't work, then you'd at least want to be well enough to enjoy life, and this is possible only if your free time off dialysis isn't spent recovering from dialysis.  Again, lessening the time burden of dialysis is desireable, and if more people had access to nocturnal dialysis, wouldn't that be grand!

There is nothing wrong with wanting to make a profit, but maybe we need to examine what we DO with that profit.  If the big dialysis providers were to take their monumental profits and plow it back into their businesses and expand their services, ie make available every other day dialysis, offer incenter nocturnal dialysis and expand their home dialysis programs, then I would love to see them make a shedload of money.

Perhaps it is time to return to non-profit health care in America, it is how we grew the best health care system in the world.

[MooseMom]

I am not in the least bit knowledgeable about the history of health care in the US...was there ever a time when health care was not for profit?  What changed?  It just seems to me that the idea of making a profit off of someone's illness is immoral, but no one has called me to ask me my opinion (I sure don't understand THAT! LOL!)