Choosing Home Dialysis Proves Tricky

Sept. 20, 2012— -- Vanessa Evans spent 10 years driving to and from a dialysis clinic three days a week to spend four hours in a chair, hooked up to a machine that hummed as it cleaned her body of toxic fluids to keep her alive.

She's one of more than 398,000 Americans who depend on dialysis to survive, according to the United States Renal Data System's 2010 figures, which came out this morning. Of those, only about 35,000 do dialysis at home, and just 5,500 of them do home hemodialyisis -- the treatment Evans decided to do in which she sticks two needles into her arm and connects herself to a machine that filters wastes, salts and other fluid from her blood because her kidneys can no longer do the job.

Making the Switch

When Evans, a part-time high school teacher, and her husband decided to have a baby through a surrogate, they decided enough was enough. Although Evans's doctor never told her about home dialysis in the hours he spent with her for more than a decade, she conducted months of internet research to find a center that had what she was looking for.

Evans, now 40, has two boys and says her NxStage home hemodialysis machine allows her to be a mom because she can do shorter treatments whenever she likes. Six years have passed, and she now uses the time she's dialyzing to read to her sons, watch movies with them or just talk.

"From a lifestyle standpoint, it's better," said Dr. Deidra Crews, a nephrologist and professor at Johns Hopkins University School of Medicine. "A lot of patients say home hemodialysis gives them more options."

Evans does two-hour treatments for five days a week and says her health has improved. Beyond simply feeling better, she no longer needs to take pills to regulate her blood pressure, which most dialysis patients need to do because high blood pressure is often linked to kidney failure.

The move to home dialysis wasn't easy, she said. More than 30 percent of dialysis patients reported that they weren't presented with all dialysis options, such as in-center hemodialysis, home hemodialysis or peritoneal dialysis (another home dialyisis that uses blood vessels in the abdominal lining), "equally or fairly," an American Association of Kidney Patients Survey revealed last year. Almost 70 percent said their doctors never mentioned home hemodialyisis.

"I was still scared to switch over," she said, thinking back to before her sons were born.

Instead of having a nurse stick two needles into her arm in the center, she had to learn how to do it herself and prepare for any alarms that might go off on the machine. But she's anchored to a center in Beverly, Mass., where she was trained, and she sees a nephrologist monthly and calls if her machine tells her anything is wrong.

Choosing a Center: What do the stats tell us?

But as ProPublica revealed two years ago with its investigation of centers with poor conditions and high mortality rates, not all dialysis facilities are equal.

Evans's old center, which didn't offer home treatment, had a 24 percent mortality rate, and her new one had a 25 percent mortality rate, according to ProPublica's Dialysis Facility Tracker, which uses mortality data collected by the Centers for Medicare and Medicaid (CMS) for 2007 through 2010. CMS has paid for dialysis treatments since a 1972 change to the Social Security Act made it available to anyone that needed it.

Could it mean that the home patients are dragging her new center's health statistics down that one percentage point?

An ABC News analysis of the nationwide facility data revealed that centers with home dialysis had lower first-year mortality rates per 100 patients on average than those that didn't. Unfortunately, although home patients are included in the mortality data, it's not clear how many of each center's patients are on treatments because CMS doesn't keep track, making the analysis virtually useless.

CMS doesn't tease out how patients on home dialysis fare compared to those who visit centers for treatment. A report on the subject is due out in January of next year.