Four hours a day.
Three days a week.
Every single week of the year.
That is how long Steve Brown of Ocean Beach spends in a UCSD Medical Center basement with a plastic tube tethering him to a machine.
He has been doing this without exception for the last nine years.
No days off. No time out.
“I asked one of the doctors … 'What would happen if I just quit? Just stopped?'” Brown said. “He told me, ‘You’d probably be dead within two weeks.’”
Brown, 70, is one of more than about 468,000 people in the nation — roughly 5,000 in San Diego County — whose kidneys no longer remove waste products through urine. They are in stage 4 or 5 kidney failure, or end-stage renal disease, and must go through this ordeal called dialysis.
So they settle into big reclining chairs, turn on a TV overhead, fiddle with cellphones and tablets or try to snooze, ignoring the softly purring machines beside them. For nearly four hours these hemodialyzers pump their blood through plastic tubing into a filter, then circulate cleaner blood back through the tubes into their veins. They do what their kidneys cannot.
“I tell my patients being on dialysis is like having a part-time job,” said Dr. Danuta Trzebinska, a nephrologist and medical director of the UCSD unit. About 128 patients cycle through, as many as 18 at a time, in the chairs lined up around the room. After dialysis, patients need to stay about an hour longer to assure they are good to leave. Adding that to travel time, she said, “and half your day is gone, or maybe more than half a day.”
Since the start of a federal dialysis quality rating program several years ago, shown with star ratings on the website Dialysis Compare, patient mortality has gone down and other quality measures have gone up in San Diego and across the country.
How dialysis centers compare
A dialysis center’s star rating is determined by scores on seven measures averaged in three groupings. The first group includes percentages of patients who died, required hospitalization or required transfusion. The second represents the percentage of patients receiving dialysis through what is considered the safest method. The third shows whether the facility adequately cleared wastes from patients’ blood, the time spent on dialysis and whether it monitored patients' bone mineral levels.
Federal officials say evidence has shown that dialysis centers that pay more attention to certain processes of care can extend the length and quality of their patients’ lives. For example, dialysis clinics work harder to have many more patients accessing dialysis through surgically created fistulas in the arm, which are easier on the body and reduce risk of infection, rather than catheters in the chest.
Brown is one of the lucky ones, because he is a survivor. Annual death rates for people on dialysis are still high, and vary widely depending on factors such as how sick patients are with other illnesses like heart disease, their adherence to medication and low-salt, low-potassium diets, and their age and stage of kidney disease when dialysis began.
At UCSD, between 11 and 13 percent of patients who start dialysis will not be alive after 12 months, Trzebinska said. Nationally, five years later, only 40 percent will be alive.
Some are waiting for a transplant. But most patients do not qualify or will die before a donor's kidney comes along. Brown, for example, said he was taken off the list three years ago because of hardening of the arteries in the area where the new kidney would be attached.
“It would just be too difficult to do a transplant,” he said. So he is resigned to this for the rest of his life.
Over the years, dialysis centers have flourished to provide care to this growing group of patients. Now, there are about 6,700 facilities, about three dozen in San Diego County.
For about 80 to 90 percent of patients undergoing dialysis, payment for their sessions comes from Medicare, which paid about $26.1 billion in 2014, or $87,482 per patient. Centers reimbursed by Medicare receive about $240 per patient per session for all center costs during dialysis. Depending on their income and insurance, patients may have to pay 20 percent of the bill, although lower income patients may have that covered under Medi-Cal.
That is why in 2008, the federal agency started to demand quality reporting, so it would know what it was getting for its money. There was a lot of variation in dialysis care, with some centers experiencing high rates of preventable death and infection, and some low.
Other costs for ancillary services like surgeries to create fistulas or catheter access points for dialysis brought the bill to about $30.9 billion in 2013.
In January 2015, after years of planning, the Centers for Medicare & Medicaid Services rolled out a one to five star rating system on its website, Dialysis Compare, to score federally reimbursed dialysis centers on seven quality measures. In part, the rating system was authorized by portions of the Patient Protection and Affordable Care Act, parts of which may soon be repealed or unfunded.
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Ratings caused the nephrology community a lot of anxiety, Trzebinska said. But the underlying premise is sound. Star ratings and public scoring serve to improve patients’ quality of life and survival by helping poorer scoring centers learn from higher scoring ones. Additionally, patients and family members can see on a website how places near them scored and know which places to avoid, and where some centers fall short.
Of the 35 dialysis centers in San Diego County, 18 received five stars including UCSD, six received four stars, six received three stars and three received just one star. Two facilities were not scored.
Facilities are star-rated based on seven characteristics, which CMS has determined most facilities have the ability to control and improve the survival and quality of life for their patients, although some center officials strongly disagree, including Trzebinska.
Because the federal agency is serious about driving higher quality of care, it has a second rating system called the Quality Incentive Program that uses a different set of 14 measures — some of which are the same as in the star rating system — but poor QIP performers receive pay cuts of as much as 2 percent for an entire subsequent year.
Currently, centers are being scored on responses to a six-question survey of patients’ experiences, including whether doctors and nurses communicated well, whether patients had higher rates of readmissions than expected, whether patients were more likely to get bloodstream infections, whether patients were assessed for depression and pain, and whether the center’s personnel were vaccinated against influenza.
Rates of readmission are a big concern, according to the U.S. Renal Data System, which says 33 percent of hemodialysis patients are rehospitalized within 30 days, compared with 17.4 percent of general Medicare patients.
Becky Hensley, of Chula Vista, who worked in administration at the Salk Institute for 28 years, started dialysis a year ago after a long-standing disease got worse and her kidneys dangerously decreased urine output. Anticipating that, Trzebinska ordered a fistula surgically installed a few months in advance, so Hensley was ready when the time came. And it was tough at first, Hensley said.
There were some problems with getting access to her veins, which are relatively thin, and for the first few months, she said, “it was really painful.” She almost gave up.
Dialysis center rating measures
Rate of transfusions: Can reveal whether the center sufficiently provides patients with a drug that stimulates growth of red blood cells to prevent anemia
Mortality rate: Indicates whether a center’s patients lived longer than expected. Patient behavior – including whether they skip treatments – can affect mortality, but the rate also can indicate whether the center fell short of providing necessary care.
Patient hospitalization rate: Given patients’ stage of disease and other factors, better dialysis centers may help patients avoid serious problems such as infections.
Toxin removal: Treatments should adequately remove a minimum amount of toxins and urea from blood. Session lengths should be matched to body weight by a formula.
Dialysis process: The center should ensure as many patients as possible are connected to dialysis machines through an arteriovenous fistula rather than a tunnel catheter. A fistula access, which requires a surgical procedure two to three months before dialysis begins, is less likely to cause infections or other complications.
Tunnel catheter: Ideally, the devices are used only temporarily while a patient’s fistula is cleaned or surgically replaced. The ratings measure whether patients have used a tunnel catheter for more than 90 days.
Calcium levels: Percentage of patients who had an average calcium level over three months that was too high. Those patients may be at greater risk for nervous system and heart complications.
But there was no another option. “When I first started dialysis I was told that if I did not go on dialysis at the point that I needed to, I would have approximately two weeks or less to live.”
Life expectancy tables for people like her, Hensley said, show they will have about five or six years left in their lives if they stay on dialysis. But she knows people who have been on dialysis 15 years.
“So it’s very important that I come,” she said. “I have grandbabies, and great-grandchildren that I want to see.”
Even though the UCSD dialysis unit got five stars, Trzebinska is not happy with the way scoring systems work.
“Yes, we are at five stars, and we are very happy and very proud,” she said, all the more so because when the ratings first came out in early 2015, UCSD got only three, and a year later four. So it has improved dramatically.
“It’s important that we have some kind of a system to measure quality of care provided to dialysis patients,” but after saying that, Trzebinska said she “hates” the scoring system because it does not take into account many patient conditions that she said are “out of our control.”
She takes issue with measuring transfusions, because patients may have liver or HIV disease or other conditions that necessitate transfusions. Likewise measuring calcium, high levels of which may be because the patient also has cancer. “But you still get punished for this,” she said. “It’s not a perfect system.”
She is not the only nephrologist to push back on the way CMS measures quality of dialysis care.
Dr. Daniel Weiner of Tufts Medical Center in Boston, who chairs the quality, patient safety and clinical practice committee with the American Society of Nephrology and is associate medical director of the Dialysis Clinic Inc. in Boston, has similar views.
“If you’re a payer you want measures to be sure you’re getting value for your expenditure,” Weiner said. “And to some extent, some of these have driven improvements in care. There are a lot more fistulas that are in use today than there were before. Whether it’s the QIP that has driven that … maybe it has made a difference to some extent.”
But many patients do not have healthy veins that can withstand a fistula and must be dialyzed through a catheter. His grandfather was on dialysis and was persuaded that he should undergo surgery to get a fistula. He said no.
“So let’s say he wants to transfer to a new dialysis unit that’s flirting with a penalty (a pay cut from Medicare as high as 2 percent), and you’ve got a 90-year old with a catheter? Are you going to take him?”
“There’s a certain amount of unfairness in the way the system measures care, both for star ratings and for payment,” Weiner said.
Others complained that the system does not adequately adjust for very sick patients. Representatives of three San Diego centers that received one star in the latest survey attributed their score to the fact that they were performing dialysis on extremely sick low-income patients in a nursing home.
“These were patients who were really very difficult, with amputations and wounds, low protein levels and very poor phosphorous control, and a lot of different issues related to their chronic diseases that brought our numbers down,” said Dr. Ricardo Soltero, medical director of FMC- Balboa South Bay Home Therapies in Chula Vista, owned by the large dialysis chain Fresenius.
For Brown, life goes on. Retired long ago from a company that made elevators, he recently bought a single lens reflex camera, and cannot wait to experiment with it on walks along Sunset Cliffs near his home.
That is, on the days when he is not sitting in his dialysis chair at UCSD.
