Why It Matters
A nephrologist in rural Texas heard about an innovative model of care in Sweden at the IHI National Forum. Five years later, his patients are doing their own dialysis — with half the rate of hospitalizations.
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From Sweden to Texas via the IHI National Forum: Do-It-Yourself Dialysis

By Richard Gibney | Wednesday, August 3, 2016
Empowered dialysis

My team thought I was crazy.

The year was 2011. I had just returned to my practice at Central Texas Nephrology Associates in Waco, Texas, after attending the most recent IHI National Forum. I was bursting with enthusiasm about what I’d learned there.

My colleagues were used to my post-Forum excitement. We had just started our journey toward patient-centeredness and quality improvement after I attended my first IHI National Forum in 2006. Coming home brimming with new ideas, tools, resources, and contact info for people all over the world was an annual tradition.

But this year was different. During her keynote address, IHI’s then President and CEO Maureen Bisognano had told the story of Christian Farman, a young man who had learned how to give himself dialysis — with the support of nursing staff at Ryhov County Hospital hemodialysis clinic in Jönköping, Sweden. He wanted to live his life on his schedule, not his providers’ time.

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Christian and the nursing staff went on to teach many other renal patients how to dialyze themselves. By the time of Maureen’s keynote, well over half of the patients were setting up their own dialysis and monitoring their treatments.

As a kidney doctor who had been practicing for over 30 years, I was very familiar with the typical dialysis set up and monitoring — what I call “hunker-down dialysis.”

Instead of just sitting quietly, this Swedish clinic’s patients were connecting themselves to the machines and doing things like exercising during their dialysis! Maureen shared photos of energetic-looking patients riding stationery bikes or doing bicep curls in the unit. With my background, I understood that Jönköping was turning assumptions about dialysis on their head.

I took Christian’s story and Maureen’s exhortations to partner more closely with patients as a mandate to go home and bring this “empowered” treatment innovation to our patients in Waco.

Building on a Foundation of Improvement

At my first Forum, people from IHI — and some of my fellow participants — warned me. They said, “After you leave here, do not go home and jump headfirst into trying to breed revolution.” Your colleagues, they cautioned, will think you’re insane if you try to change too much too fast. 

So, of course, I went home immediately and tried to breed revolution!

But, by 2011, I had learned to combine my zeal with sober information. To make the case for trying to replicate the work in Jönköping, I shared the data: patients on empowered dialysis experienced far fewer complications and infections than those on conventional dialysis, with costs reduced up to 50 percent per patient.

These dramatic results got my colleagues’ attention. But it was our practice’s history of continuous improvement that made us willing to suspend our disbelief and open our minds. We had, over the years, seen the value of carefully considering the lessons our fellow improvers had to offer. We knew about using data for improvement, and about small tests of change. We had adopted what we thought was a patient-centered approach to care. We soon discovered, though, that we had much more to learn.

Care from the Patients’ Point of View

In 2013, we brought Christian Farman and Britt-Mari Banck, the first nurse who listened to Christian’s request to do his own dialysis, to Waco for a week. Almost from the moment they walked in the door, they helped us see things differently. They compelled us to view the care experience from the patients’ perspective.

They began by politely asking questions: Would you be willing to turn the dialysis machine to face the patients? Would you give patients permission to touch the machines? Would you let patients insert the needles into their own bodies?

These inquiries represented the diametric opposite of our practice at the time. Up until then, we pretty much told patients to sit down, put out your arm, be quiet, and don’t touch anything. (We were polite, but that was essentially our protocol.) Much as I hate to admit it now, our treatment encouraged boredom, depression, and learned helplessness.

When we started to ask patients if they wanted to learn to do their dialysis themselves, they were surprised, but most were receptive. Within a few months, the number of hospitalizations and mortality for patients on empowered dialysis fell like a rock.

Better Care, Lower Costs

In 2015, the first year of the program, the difference in outcomes for patients on traditional dialysis and empowered dialysis was staggering.

Of the 560 patients we had on traditional dialysis, there were 1,099 hospitalizations and 90 deaths. Of the 191 patients on empowered dialysis, there were only 125 hospitalizations and five deaths. Traditional dialysis patients were hospitalized at a rate of 1.9 hospitalizations per patient compared to 0.7 for the empowered group — more than twice as often.

Empowered dialysis

We’re now in the top three percent of the dialysis clinics in the US, and we have a five-star rating from Medicare. Our empowered dialysis patients have lower rates of death and hospitalization than our traditional dialysis patients. Clearly, this not only dramatically improves quality of care and quality of life for patients, but results in a dramatic cost savings to Medicare.

We currently have about 280 patients using empowered dialysis in 12 centers in the Waco area. Two of the centers use only the empowered model, while the others offer a hybrid of empowered treatment along with the traditional model. All our new patients start dialysis using the empowered model. They can choose either home therapy, nocturnal therapy (eight hours of dialysis at night), or the empowered in-center method (which is essentially like getting in-center home therapy.) Our patients using any of these options have low hospitalization and mortality rates. They’re not only healthier, they’re thriving. Some of them have surprised us.

One woman — I’ll call her Michelle — is a good example. Michelle frequently missed treatments, didn’t always take her medications, and didn’t consistently follow her prescribed diet. Not surprisingly, she wasn’t doing well.

With some apprehension, but encouraged by the success of other patients, we asked Michelle if she wanted to run the dialysis herself. She agreed and rapidly became one of the best patients in the unit.

I don’t mean that she kept all her treatment appointments, took her medication, stuck to her diet, and her health improved — although all that was true. I mean that Michelle became one of the most active and supportive teachers of new patients. Taking control of her own dialysis not only made her feel more independent and hopeful, it but it also gave her the confidence to coach and encourage others.

When I tell people our story, all the doctors ask, “You mean you didn’t get the results from using a new gadget?” No. “You’re not using a new medication?” No. “You just let the patients do their own dialysis?” Yes!

Can I tell you we’ve had 100 percent success? No, of course not. And it certainly hasn’t been easy. There has been lots of training, coaching, cheerleading, and mentoring. We’ve had to develop totally different doctors’ orders to authorize the patient to do their own dialysis. But the improvements that have come from engaging and giving patients control have been so dramatic that it’s hard for skeptics to argue.

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