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August 19, 2019

What it's really like to get dialysis at home

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    The Trump administration wants to shift most dialysis care to patients' homes—a practice that providers say can improve quality of life, but can also present a "burden" for older patients that "shouldn't be underestimated," Judith Graham reports for Kaiser Health News.

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    The executive order

    President Trump last month issued an executive order that calls on HHS to overhaul the kidney care and donation allocation process, and HHS shortly after unveiled new payment models for Medicare providers who manage patients with kidney disease and end-stage renal disease (ESRD).

    Under the proposed mandatory ESRD Treatment Choice model, CMS would assess participating providers based on their rates of kidney and kidney-pancreas transplant and home dialysis.

    Participating providers would receive a Medicare payment boost or penalty based on their rates of kidney and kidney-pancreas transplant and home dialysis. The program would launch in 2020, and the financial adjustments would take effect in 2021 and vary annually through June 30, 2026, based on the previous year's performance.

     Older adults likely to be most affected

    The Trump administration said the ESRD Treatment choice model is designed to allow more patients advanced kidney disease to receive home dialysis. In fact, the administration said that by 2025, the goal is for 80% of patients who are newly diagnosed with ESRD to receive kidney transplants or home dialysis. That would be a large shift, Graham reports, as 88% of the estimated 726,000 ESRD patients today receive care in dialysis centers, while the remaining 12% get home dialysis.

    According to Graham, the shift in care is likely to disproportionately affect older adults, as about 50% of patients who learn they have kidney failure each year are 65 or older.

    Home dialysis has its benefits, according to Graham. Patients don't have to travel to a dialysis center for treatment, recovery times are shorter, and the treatment can be delivered more often and be more customized. Overall, "patients' quality of life tends to be much better," according to Frank Liu, director of home hemodialysis at the Rogosin Institute.

    "But home dialysis isn't right for everyone," Graham writes.

    Older adults with poor eyesight, bad fine-motor coordination, or depression or cognitive impairment generally don't fare well with home dialysis, according to specialists. And older adults with comorbid health conditions might need even more help from family and friends to navigate the at-home treatment. 

    According to Graham, about one-third of patients who try home dialysis eventually switch to receiving the treatment at a dialysis center, usually because of complications or a loss of motivation.

    What the home dialysis looks like for seniors

    Jack Reynolds, 89, has done peritoneal dialysis at home seven days per week for three and a half years.

    He administers his dialysis while he sleeps, so after dinner he spends 23 minutes gathering the materials and cleaning and sterilizing the equipment. Before bed, Reynolds hooks up to his dialysis machine, which runs for seven and a half hours.

    Reynolds said he has had to replace three malfunctioning machines and had to learn to sleep differently.

    But other than a few small complications, "I live a normal, productive life, and I'm determined to make this work," Reynolds said.

    For other patients, home dialysis is more complicated, Graham reports.

    Letisha Wadsworth, started home hemodialysis in 2003.

    To do home hemodialysis, Wadsworth, who's now 70, and her husband, had to undergo one to two months of education and training. "We learned a lot about dialysis, but we still didn't know about issues that could arise when we got home," she said.

    For instance, Wadsworth was left to figure out what to do if air gets into one of the lines and had to find space for 30 boxes of dialysis supplies.

    Additionally, after Wadsworth had a stroke in 2013, she had to rely on her husband to help set up the machine.

    Wadsworth is just one of many older patients who need help with their dialysis, Graham reports.

    Mary Epp undergoes peritoneal dialysis every night. Epp has an aide who comes daily at 7 p.m. to help her set things up and another who comes at 5 a.m. to help Epp break everything down, Epp reports.

    But Epp said the benefits of at-home therapy far outweigh its cons. "You just go to bed and wake up the next morning and you're ready to go and meet the day" (Graham, Kaiser Health News, 8/16).

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