Come January, there may be many more people like Mary Prochaska.
Prochaska, 73, a retired social worker in Chapel Hill, North Carolina, has advanced chronic kidney disease and relies on dialysis to filter waste from her blood while she awaits a kidney transplant, her second. But she no longer visits a dialysis center three times a week, the standard treatment. There, nurses and technicians monitored her for four hours while a machine cleansed her blood.
Instead, she has opted for dialysis at home. “It’s easier on your body and better for your health,” she said. “And far better than exposing yourself to whatever you might get from being in a group of people” at a treatment center during a pandemic.
With her husband’s help, Prochaska performs peritoneal dialysis; after a surgeon implanted a tube in her side, her abdominal lining acts as the filter. She received training for a couple of weeks and then began using a home machine called a cycler to remove excess fluid and impurities.
“It automatically does the pumping in and pumping out, five times a night, while you sleep,” she said. “When you get up, you’re done. It’s like having a normal life.”
So far, her only unpleasant side effect is fatigue, sometimes requiring afternoon rests. A company called TruBlu Logistics delivers the cases of solution, tubes and other supplies, and Medicare covers the costs, which are considerably lower than for in-center dialysis.
In 2017, according to the United States Renal Data System, 14.5% of Medicare beneficiaries had chronic kidney disease, rising sharply with age from 10.5% of people 65 to 74 to almost a quarter of those over 85. Nearly half of dialysis patients were older than 65.
For decades, health advocates and many nephrologists have encouraged more patients to consider home dialysis. But in 2017, of 124,500 patients with newly diagnosed advanced kidney disease (also called end-stage renal disease), only 10% began peritoneal dialysis as Prochaska did.
Another 2% turned to at-home hemodialysis, removing wastes with machines adapted from those used in centers.
Everyone else starting dialysis went to a dialysis center, probably owned by one of the two corporations that dominate the industry, DaVita or Fresenius.
This fall, however, Medicare announced a mandatory program intended to transform that system, covering about 30% of beneficiaries with advanced chronic kidney disease, close to 400,000 people. Starting Jan. 1, it will use payment bonuses — and later, penalties — to try to increase the proportion of patients using home dialysis and receiving transplants.
Even experts with no love for the departing administration have called this approach the biggest change for kidney patients since 1972, when President Richard M. Nixon signed legislation providing Medicare coverage for those in kidney failure, regardless of age.
“This is bold,” said Richard Knight, a transplant recipient and president of the American Association of Kidney Patients. “There are a lot of incentives for providers to do things they have not traditionally done.”
“I think it’s going to have a really profound impact on kidney care,” said Dr. Abhijit Kshirsagar, a nephrologist and the director of the dialysis program at the University of North Carolina.
Studies have found that home dialysis patients report a greater sense of independence and autonomy, with more flexible schedules that make it easier to work or travel. They experience a better quality of life. So why do so few choose it?
Some patients begin dialysis when a health crisis sends them to an emergency room. With scant time to explore the decision or undergo the necessary training to dialyze at home, they wind up at centers.
But many don’t seem to know they have alternatives. In a 2016 study, almost half the patients receiving in-center hemodialysis said it had not been their choice.
“There are patients who don’t know they could do dialysis at home,” said Dr. Suzanne Watnick, chief medical officer of Northwest Kidney Centers in Seattle. “To me, that’s a travesty. Patients who’ve gotten education about the different modalities have a markedly higher rate of participation in home dialysis.”
But the training that physicians receive may not emphasize that option. Moreover, once patients grow accustomed to a center, “where everything is done for you, you’re not likely to take on the responsibility of doing it at home,” Knight said. Home dialysis can seem daunting or frightening, and neither medical practices nor for-profit centers have had much motivation, at least financially, to promote it.
Thirty percent of them soon will. Medicare will increase its monthly payments for each patient who receives home dialysis, starting at 3% the first year, decreasing thereafter. Practices and dialysis clinics will also have their reimbursements adjusted up or down depending on their total rates of home dialysis and transplantation.
Several new voluntary programs will increase incentives, too. Starting in April, Medicare will pay providers a $15,000 bonus, over three years, when a patient receives a successful kidney transplant. Another measure provides greater support for living kidney donors.
Whether such incentives will substantially increase home dialysis and transplants remains an open question.
Some providers, noting that the penalties could outweigh the bonuses, aren’t pleased to fall into the 30% of covered practices or centers, randomly assigned by ZIP code. “The average nephrologist is going to have a pay cut,” Watnick said.
Moreover, not all older kidney patients can or want to dialyze at home. “They may have some degree of cognitive impairment” or be too frail to lift bags of solution, said Dr. Gerald Hladik, chief of nephrology at the University of North Carolina. They need room to store supplies and a clean, private dialysis space.
Even with ample discussion and education, it’s unclear what proportion might eventually choose home dialysis. Perhaps 25% to 50%, Watnick suggested — “but we don’t know.”
Although the new Medicare model excludes nursing home residents and people with dementia, the choice will otherwise rest with patients. Especially during a pandemic, “we’re in favor of patients having the choice to go home,” Knight said. “But not in favor of pushing people to go home.”
Some older people with multiple illnesses may decide to forgo dialysis altogether. Wherever performed, it’s physically and psychologically onerous, and survival decreases at older ages.
Hladik’s 75-year-old father, for instance, wanted to spend his remaining days at home with his dog or at the beach. He chose conservative management to control his symptoms and lived comfortably for a year and a half without dialysis.
But home dialysis has worked well for Jorge Moreira, 65, a bookkeeper in Burien, Washington. As his kidney disease advanced four years ago, he began dialysis at a Northwest Kidney Centers’ clinic.
He found it arduous to arrive at 5:30 a.m. three days a week so that he could finish by 9:30 and go to his office, and he suffered painful leg cramps. A technician suggested he look into peritoneal dialysis; his doctors agreed.
The first couple of months were difficult, Moreira said, as he learned the manual technique, dialyzing four times a day. Then, like Prochaska, he graduated to a cycler machine and now exchanges fluids overnight. It’s simpler, he said, and suits his active life; he walks and mountain bikes and serves as a pastor.
“I have more time for myself, my family, my business,” he said. “I have more strength. I sleep very well. I feel good.”