If Richard Gibney, MD, had any doubts about evangelizing a new approach to dialysis, they evaporated in the wake of Hurricane Harvey.
The hurricane flooded Houston last summer, driving thousands of dialysis patients north to receive care. About 50 wound up at one of the dozen dialysis centers that Central Texas Nephrology Associates, the group practice where Gibney is Medical Director, operates in and around Waco, Texas.
“The contrast was striking. The people from Houston were chronically ill. Our patients are all healthy, and they look healthy,” Gibney says. “It was shocking.”
The treatment Gibney’s patients receive is no different from those undergoing dialysis in Houston or most other parts of the United States. However, many of the Central Texas Nephrology Associates patients perform portions of or even the entire dialyzing process themselves, up to and including the necessary blood tests, hooking needles into their limbs, and cleaning up afterward. Data suggest that self-dialysis patients are less likely to be hospitalized and have lower mortality rates, although there have yet to be specific studies comparing them to more traditional dialysis patients.
The way Gibney effusively discusses self-dialysis — he calls it “empowered dialysis” — makes it seem more akin to zip-lining than the last-ditch, often enervating treatment dialysis has been since it kept the first patient alive more than 70 years ago.
But Gibney contends that dialysis isn’t what wears people down; rather, it’s the process of someone else hooking them up to a machine 3 days a week, while they then sit for 4 hours or more waiting for it to be over. “When patients take an active role in their care, they have dignity, they have respect . . . if you come and visit, it’s a happy place,” he says, adding that patients often help one another. That three of Gibney’s self-dialyzing patients are blind suggests the process can be mastered even with significant impairments.
The Origin of Empowered Dialysis
Self-dialysis originated in Sweden, a nation closely identified with a certain global purveyor of home furnishings that has convinced hundreds of millions to assemble their own bookcases and sofas. But there was no business motivation involved — only the despair of a young engineer with Saab’s aeronautical division named Christian Farman. He returned to dialysis in 2010 after a transplanted kidney failed. Farman was so dismayed by the prospect of resuming the treatment that he began negotiating with his nurses to hook himself up to the machine.
Farman’s self-dialyzing caught the attention of other patients. The facility where he received care, Ryhov County Hospital in the city of Jönköping, began letting other patients do so as well. Eventually, the process grew so popular that a new unit was built at the hospital for self-dialysis patients only. Their input was used for its design, according to Göran Henriks, Chief Executive of Learning and Innovation at the Jönköping County Council’s Qulturum, a public think tank focused on improving health care delivery. Some of the patients have keys to come into the facility during off-hours.
Amy Compton-Phillips, MD, Executive Vice President and Chief Clinical Officer for Providence St. Joseph Health, the nation’s third-largest health system, has met with many self-dialysis patients in Sweden. “It’s a hugely different approach,” says Compton-Phillips, who is also a member of NEJM Catalyst’s Leadership Board. Where traditional dialysis often leads patients to feel like they’re cattle, she says, the self-dialysis patients in Sweden “looked more engaged, [and] were active and listening. A couple of patients were riding stationary bikes. It was like a center filled with life.”
Patients able to guide their own dialysis treatment find the experience empowering, Henriks says. “We went from a situation with no patients who [had jobs], and then all of them were working. It was a tremendous development. They no longer think of themselves as sick people, but healthy people with a need for dialysis.”
Currently, about 56% of Central Texas Nephrology Associates’ dialysis patients — 423 in all — engage in all or some stages of self-dialysis, either at a center or at home. That’s double the number from a year ago. According to Gibney, the mortality rate among this group is 5.6% per year, compared to 15.9% for his patients undergoing conventional dialysis. The nationwide average mortality rate per year is 16.9% for hemodialysis — where blood is drawn for cleansing and returned through a surgically created port in a patient’s arm or leg. That’s the kind of dialysis nearly 90% of American patients receive, according to data from the U.S. Renal Data System (USRDS), the government body that compiles statistics on kidney disease and dialysis. The mortality rate is 15.9% for peritoneal dialysis, where the port is located in the patient’s abdomen and their peritoneum assists in filtering the blood.
Gibney’s self-dialysis patients are also less than half as likely to wind up being hospitalized compared to traditional patients — 0.8% against 2.1% — according to his data. Dialysis patients are hospitalized for issues such as fluid retention, peritonitis, or other issues.
Fresenius Medical Care, one of the two major U.S. dialysis companies, is working with Gibney to examine self-dialysis as a pilot project. The company released a statement saying it is “committed to innovating a range of lifesaving dialysis delivery methods and models — such as engaged (self) care and home dialysis — as part of our mission to improve our patients’ lives by addressing the full spectrum of their widely-varied conditions and needs. This requires a dutiful approach, ensuring that we examine any dialysis care model’s clinical data with discipline, by looking across the organization and determining the benefits for a broad range of patients, not just those within a particular demographic, geographic, or clinical subset.”
Hard Limits to Self-Care?
The self-dialysis movement is growing, but slowly. Henriks notes that despite its success in Sweden, it’s still only being used in a handful of hospitals. And aside from Gibney’s Texas experiment and some patients at Kaiser Permanente in Northern California, it still has limited traction in the United States.
When self-dialysis does occur in the U.S., it’s usually at a patient’s home as opposed to a clinic. According to the USRDS, about 8.6% of kidney patients underwent dialysis at home in 2015, up by more than 82% since 2007. Only 3.5% of that group underwent hemodialysis — fewer than 1,000 in all, although that’s up about fourfold from a decade earlier. The great majority of at-home procedures are for peritoneal dialysis, which can more easily be performed at home because the equipment required is about the size of a briefcase.
Home hemodialysis may have some hard limits. Patients living in a small apartment or house may balk at having to dedicate a significant amount of their living space to the required equipment and supplies, says Leonid Pravoverov, MD, Medical Director for End-Stage Renal Disease Services for Kaiser Permanente in Northern California.
Kaiser Permanente dialyzes about 5,000 of its health plan enrollees in Northern California. As of the third quarter of 2017, about 1,100 were on peritoneal dialysis. Another 60 were receiving hemodialysis at home. The latter usually require a friend or family member willing to provide support, and up to 4 weeks of training before they become proficient enough to do it entirely on their own, according to Pravoverov. “It’s a much more intensive training experience than peritoneal dialysis,” he says, noting that patients who self-dialyze tend to have a higher level of determination than other patients. Data accumulated by Kaiser Permanente and published in a 2014 study in the journal Kidney International indicate that patients undergoing peritoneal dialysis at home have better survival rates than hemodialysis patients over the first 3 years of treatment.
For a significant number of patients, self-dialyzing inside a clinic may be the right answer. Compton-Phillips says many patients have told her that dialyzing at home is “not for me. Instead, I want to keep it here, and then I can be myself at home.”