Kidney Patients Need Integrated Care Management Now

I have a close friend, Eliot who is a highly successful academic physician.  I have known him for nearly 35 years, and our lives have crossed in many interesting ways over the years.  He grew up in an affluent suburb in Boston, similar to where I grew up in Chicago, each of us part of large loving families including incredible younger brothers with whom we were very close.  He has done extensive work with NIH and industry funded research in his area of interest, similar to my work in kidney disease.  This story is not really about me or Eliot, but about Eliot’s brother, Steve.

Steve was four years younger than Eliot and as he grew and started high school it became clear that he had an incredible intellectual gift.  Many called him a genius, and he excelled not only in academics, but had a full and rewarding social life.  No one was surprised when he was accepted to Stanford for undergraduate work, and he settled into California smoothly.  He decided to become a doctor, like his older brother and was accepted to Stanford Medical School.  During his senior year at Stanford undergraduate, however, things started to change and by the middle of his freshman year in medical school he was diagnosed with schizophrenia.  He struggled valiantly to continue with many adjustments in medications but by sophomore year he had to drop out and shortly thereafter he was living in an  assisted living facility.  Two years later he had a complete medical evaluation because of severe fatigue and was found to have CKD- a kidney biopsy was consistent with amyloidosis.  Over the next three years he developed ESRD and started in-center hemodialysis.

By this time Steve was approaching 40 years old, and because of a family history of colon cancer his primary care doctor felt a screening colonoscopy should be performed.   The procedure was scheduled on a day between dialysis days, the colon was normal except for a few benign looking polyps which were biopsied, and there were no complications noted.  Steve returned for an uneventful  routine dialysis the following day, went home, and was found the next morning in a massive pool of blood.  He had bled to death from his rectum during the night.

Did Steve have an incompetent PCP or nephrologist?  A lousy dialysis facility?  Bad luck?  NO!  Steve was a tragic example of the highly fragmented care that is delivered to patients with kidney disease that leads to poor outcomes and limits the ability of patients to achieve their full quantity and quality of life despite having a devastating illness.  The fact that a care delivery system could fail so badly, even for highly educated patients, is unacceptable.  ESRD patients are among the most complex medically that have to navigate this system- 3-4 co-morbid conditions, 8-10 different medications, 3-7 physician providers, and on it goes.  Add to this the lack of an electronic health record, and the current disorganized care is understandable- the system is broken.

Of course the reimbursement system magnifies this compartmentalization of care.  Investing in proactive care, including critical care coordination, is under the purview of Medicare Part B, but is generally not reimbursed.  This is ironic since the result of such care coordination is a decrease in unnecessary hospitalizations, as overall quality is improved.  This results in  significant savings to Medicare Part A, more than enough savings to offset the costs of the care delivered.  This money is not made available to Part B, however, under the dominant fee for service system.   Over the past 15 years there has been a clear demonstration by a number of organizations that care coordination can significantly improve clinical outcomes for ESRD patients and constrain the costs of care.  In order to carry out these programs, however, such groups as Kaiser, DaVita and Fresenius have had to rely on contracting with commercial insurers (Medicare Advantage programs) or participating in CMS Demonstration projects.  There have been two such Demos in the past decade, both showing improved outcomes and constrained costs, but there is no plan from CMS to now extend such programs to the full
ESRD population.

The latest iteration of care coordination focusing on improving quality and controlling costs is ACOs (accountable care organizations).  A construct contained in the Affordable Care Act, the recently published preliminary rules unfortunately make ACOs focused on ESRD patients difficult if not impossible to carry out.  While the new Center for Medicare and Medicaid Innovation (CMMI) may be another vehicle for a new care coordination pilot in ESRD, the renal community needs to be vocal in asking:  Why another Demo?  Who will advocate for the ESRD patient in general ACOs?  Why is it so difficult to get the attention of policy makers for this vulnerable, costly population, particularly when a care delivery model that could have significant positive impact has already been proven to work?

It’s time for us to redouble our efforts to push decision makers to do what is right for our patients.

I look forward to your comments, until next time.

Striving to bring quality to life,

Allen R. Nissenson, MD

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