Editor’s Note: After nearly a year and a half of rewrites and recalculations, the Centers for Medicare & Medicaid Services appears ready to launch the Comprehensive ESRD Care Initiative, a five-year demonstration using accountable care organization principles to determine if placing dialysis providers and nephrologists in charge of all aspects of a patient’s medical needs will improve quality and save money. At the core of this ACO model will be ESRD “Seamless Care Organizations” that will coordinate the care, manage the array of specialists and, if all goes well, divide up the health care savings under the new system.

This new series in NN&I –– ACOs: The Renal Model––will highlight approaches from three providers on how they are improving the quality of care in their organizations. Two of the three, Dialysis Clinic Inc. and the Centers for Dialysis Care, are participating in the demonstration. The lessons learned by these providers are all applicable to the goal of the ESCOs.

If I had chronic kidney disease, I would want to avoid dialysis.

It may be strange to hear this from a leader of a large dialysis organization that provides treatment for over 14,000 patients across the country.

But wouldn’t you want to do the same? That’s when we have a valuable role in helping patients avoid dialysis, or at least use our knowledge base to slow its progression. It’s what we simply call CKD Care Coordination. And it works.

Some background

My father, Keith Johnson, MD, founded DCI 44 years ago, two years before Medicare funded the ESRD Program. He did not start DCI because he saw dialysis as an ideal solution to kidney failure. My father is a transplant nephrologist, and his purpose in providing life-saving dialysis was to keep patients alive long enough to be able to give them a life-changing kidney transplant.

From October through December 1970, my father was one of the fellows on duty in the Vanderbilt University Hospital inpatient dialysis unit. At the time, a nephrologist had to be present during every dialysis treatment, so my father and the other fellow, Dr. Ron Watham, would stay up until midnight or 2:00 am to keep a few stable patients alive while they waited for a transplant. They were exhausted, but knew there had to be a different way to provide dialysis. They read about Northwest Kidney Centers in Seattle, Wash., the world’s original outpatient dialysis provider. My father figured, “If they can do it in Seattle, we can do it in Nashville.”

During Christmas break in Florida, my father explained the dilemma facing patients with kidney failure to my grandfather (also a physician). My grandfather agreed to financially support the project through a medical foundation and DCI treated its first patients in Nashville in May 1971.

Making good better

Fortunately, Medicare does now cover dialysis, and DCI currently cares for 14,800 patients at 230 clinics in 28 states. Although we have grown, DCI has continued to focus on improving care for patients as our primary mission. This is reflected in our mortality and hospitalization rates that have been the lowest of the national providers for 12 successive years.

However, we know that we can further improve our care for patients with kidney disease. For the last four years, we have worked with four other nonprofit providers––Northwest Kidney Centers, the Centers for Dialysis Care, the Independent Dialysis Foundation, and The Rogosin Institute––in a learning organization to identify gaps in care for patients with kidney disease and to propose solutions to improve their care. We call ourselves the Nonprofit Kidney Care Alliance. DCI has been transformed by what we have learned from our nonprofit partners.

‘Compete against our clinics’

Early in our conversations about opportunities to impact the quality of care, we all recognized the need to help patients with chronic kidney disease, and to improve the transition to their next step in care. At DCI, we have come to realize that CKD Care Coordination is an intervention separate and distinct from dialysis treatment. Some call CKD education “a funnel to dialysis.”  Our model is not a funnel, but instead built on setting up roadblocks. Our goal is to do everything possible to keep a patient off dialysis. We are intentionally competing with our dialysis clinics, working to keep patients off dialysis, or at least to push back the start of dialysis. My father often states: “Our goal is to put ourselves out of business by supporting transplant and decreasing the incidence of ESRD.” I don’t think he ever anticipated us working so aggressively to put DCI out of business as a dialysis provider, but we are definitely following his vision.

Two years ago I met with my father and the DCI Executive Committee, and asked for funding for CKD Care Coordination. With DCI support, we have grown this program (see sidebar). We only have preliminary outcomes, but are encouraged about what we have seen so far. Although the initial numbers are impressive, they are not the true story. The true story is the lives that have been changed as people with CKD have taken control of their health and learned that they can have the life they want to live, without their kidney disease getting in the way.

We see transplant as the ideal therapy for patients at the transition in kidney care and currently operate three Organ Procurement Organizations (in Tennessee, New Mexico, and Northern California). Because of the hard work of the dedicated staff at these three OPOs, more than 500 people received a kidney transplant in 2013. In our CKD Care Coordination programs, we are working to improve access to transplantation, both as a means to avoid dialysis, and a means to transition off dialysis.

No dialysis must be an option

As a patient is choosing treatment options, we want to make sure that the first decision made by the patient is whether or not he or she wants to be treated with dialysis. Recent studies have shown that, for certain patients, outcomes are similar for patients choosing medical management without dialysis, compared to those choosing dialysis. These patients know that they can change their decision at any time. They also know that we will not abandon them and will continue to care for them as their kidney disease progresses. Our CKD Care Coordinator and the patient’s nephrologist will continue to see the patient. In addition, we will arrange for the provision of palliative care if this will be helpful for the patient, and, when appropriate, hospice care. For some patients, it may be best to provide a short trial of dialysis to determine whether dialysis is helpful for them.

We have learned that one of the most important services that we can provide for a patient who has selected medical management without dialysis is to serve as an advocate for the patient and meet with the patient’s family. In our opinion, a patient choosing medical management is not “giving up,” but is instead embracing having the best quality of life possible. By talking with our patients early, we give them the ability to discuss this and other options with their family and make the best choice for their life. Too often the discussion about dialysis occurs too late and it is very difficult for a patient to choose medical management without dialysis.

For those patients who select dialysis, we talk about the benefits of home dialysis. We have seen that patients who dialyze at home have more independence and much more satisfaction in their care. For those patients who select in-center dialysis, we talk with the patient about the importance of having a permanent access, preferably a fistula. We explain to the patients that if they receive dialysis with a catheter, they are more likely to have an infection, more likely to go to the hospital, and less likely to live. If a patient chooses to have a fistula, we work with the patient to get an appointment with a local champion access surgeon and then follow the patient to make sure that the access is maturing. Because we are working with patients early, we have time to wait for the fistula to mature, and can avoid placing a hemodialysis catheter. Nationwide, only 20% of patients start with a permanent access. 2 In my opinion, this outcome is a failed transition in care –- we can do much better.

Finally, by following these patients closely as they approach the transition to their next step in care, we have been able to provide these patients with a smooth transition to dialysis, and start them as an outpatient, instead of requiring a hospitalization for the first treatment.

Conclusion

We are encouraged by the early results of our CKD Care Coordination program. The most exciting aspect about this program is hearing about patients transforming their lives so that kidney disease does not keep them from living the life they want to live. We look forward to sharing more about our program as we collect more results. In the meantime, we plan to publish patient stories on the DCI website: www.dciinc.org.

We also know that this vision of care cannot be self-sustaining. We are providing this care for 2,800 patients free of charge and we know that eventually we will need to receive reimbursement for this service. When my father started DCI 44 years ago, he hoped that one day Medicare would cover dialysis so that more patients could receive lifesaving dialysis. Similarly, we hope that in the near future Medicare and other payers will provide payment for CKD Care Coordination services so that more patients can receive the benefit from these services. Let’s talk with Congress about making this a priority.

References

1.     U.S. Renal Data System 2014 Annual Data Report, Vol. 2. Figure 1.1, page 236.

How CKD coordination works

DCI has five principles of care for its CKD Care Coordination program:

1.     The primary goal is to decrease the number of patients needing dialysis.

2.     If a patient’s kidney disease does progress, they should receive education on choices for the next step in care, including:

a.     Kidney transplant

b.     Home dialysis

c.     In center dialysis with a permanent access, preferably a fistula

d.     Medical management without dialysis

3.     Once a patient has made his or her choice, we will help the patient navigate the health system to implement this choice.

4.     Starting dialysis is a life-changing event, and studies have not shown a benefit to starting dialysis earlier. Therefore, patients should only start dialysis when clinically required.

5.     The transition to dialysis should be smooth, with the first treatment as an outpatient, if clinically appropriate.

We currently care for more than 2,800 patients with CKD in 28 locations. The number of patients served is rapidly growing: a year ago we cared for 1,690 patients. Here is the current distribution by stage of CKD:

  • Stage 5: 18%
  • Stage 4 late: 24%
  • Stage 4 early: 23%
  • Stage 3b: 20%
  • Stage 3a: 8%
  • Stages 1-2: 6%

We are currently following more than 500 patients with stage 5 CKD, but we don’t feel we need to start patients on dialysis. We are learning that if we follow them closely, we can wait until they have symptoms and then work with them to transition to their next step in care.

Our current data are very preliminary, mostly self-reported by our CKD Care Coordinators. We have developed an IT application and are expanding its use so that our Care Coordinators can enter data from clinic visits into DARWIN, our electronic health record. We look forward to sharing more detailed information in the future.

Our goal is to work with patients early in their CKD and to empower them to better manage their health so that they can slow progression of CKD and avoid dialysis. We hope that most of our patients will see a Care Coordinator when they have stage 3 CKD. At that point, the Care Coordinator will sit down with the patient, ask the person about his or her life goals, and tell the patient, “You have already lost half the function of your kidney and are on the road to dialysis. Would you like to work together to stay off dialysis?”

We hope that patients will be able to slow the progression of their kidney disease as they work to improve the management of their medical problems, particularly hypertension and diabetes. We expect that the quality of their life will improve, and the cost of their care will decrease, as they become more involved in their own care. We are inspired by the stories of many individuals who have taken control of their care, and improved their lives after learning that they have kidney disease. As we collect more outcomes data, we look forward to sharing what we find about treatment for patients with stage 3 CKD.

If a patient’s CKD progresses to Stage 4, we want to start working with them to make the best choice for the next step in care. Once the patient makes a choice, we will work with the patient to help navigate the system and implement the choice.

The Spartanburg experience

One of the places that CKD care coordination has really taken off for DCI is in Spartanburg, SC. We currently care for 576 patients with CKD––more than we have on dialysis. Of these 576 patients, 92 have a GFR < 20. All but two of these patients have made their choice for their next step in care. We are still working with the two patients who have not decided and hope to help them and their families choose their best treatment plan.

Our CKD Clinic is located in the nephrologists’ office in Spartanburg.  We partner with nephrologists in the care of patients with CKD; if the nephrologist sees a patient every six months, our CKD Care Coordinator also sees the patient every six months, with the net effect being that the patient is seen twice as frequently. After each visit, the CKD Care Coordinator sends a progress note to the nephrologist summarizing the visit.

We have learned a great deal from the Spartanburg program about how we can better care for patients with CKD.  Many patients with uncontrolled hypertension or diabetes become more engaged in their care, with better clinical outcomes, once they know that they are at risk of starting dialysis and that they have an additional partner who will help them better manage their care.

For those transitioning to the next step in care, a large number of patients are choosing medical management without dialysis.  Currently, 20 of the 92 patients with a GFR < 20 have chosen medical management without dialysis.

Of those who choose dialysis, many are choosing to dialyze at home.  In Spartanburg in 2014, 29% of the patients who received CKD Care Coordination started dialysis at home with peritoneal dialysis. In contrast, nationwide, less than 9% of patients started dialysis with peritoneal dialysis in 2012. 1

And for those who choose in center dialysis, many are getting a fistula placed early, so that it will be ready to use when they start dialysis. In Spartanburg in 2014, 73% of patients who received CKD Care Coordination started with a fistula and never needed to have a catheter.

We have also seen that we have found a “sweet spot” in Spartanburg in which we can both push back the start of dialysis and make it more likely that the patient will start dialysis as an outpatient, avoiding the first hospitalization.  In Spartanburg, 58% of those patients who received CKD Care Coordination and started dialysis in 2014 did so as an outpatient, compared to 2% of those patients who started dialysis without CKD Care Coordination.