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In Dialysis, Life-Saving Care at Great Risk and Cost

Every year, more than 100,000 Americans start dialysis. One in four of them will die within 12 months—a fatality rate that is one of the worst in the industrialized world. And dialysis arguably costs more here than anywhere else. Although taxpayers cover most of the bill, the government has kept confidential clinic data that could help patients make better decisions. How did our first foray into near-universal coverage, begun four decades ago with such great hope, turn out this way? And what lessons does it hold for the future of health care reform?

Three times a week, patients are tethered to a machine that cleans their blood. (Credit: Roberto Bear Guerra)

In 1972, after a month of deliberation, Congress launched the nation's most ambitious experiment in universal health care: a change to the Social Security Act that granted comprehensive coverage under Medicare to virtually anyone diagnosed with kidney failure, regardless of age or income.

It was a supremely hopeful moment. Although the technology to keep kidney patients alive through dialysis had arrived, it was still unattainable for all but a lucky few. At one hospital, a death panel -- or "God committee" in the parlance of the time -- was deciding who got it and who didn't. The new program would help about 11,000 Americans, just for starters. For a modest initial price tag of $135 million, it would cover not only their dialysis and transplants, but all of their medical needs. Some consider it the closest that the United States has come to socialized medicine.

Now, almost four decades later, a program once envisioned as a model for a national health care system has evolved into a hulking monster. Taxpayers spend more than $20 billion a year to care for those on dialysis -- about $77,000 per patient, more, by some accounts, than any other nation. Yet the United States continues to have one of the industrialized world's highest mortality rates for dialysis care. Even taking into account differences in patient characteristics, studies suggest that if our system performed as well as Italy's, or France's, or Japan's, thousands fewer patients would die each year.

In a country that regularly boasts about its superior medical system, such results might be cause for outrage. But although dialysis is a lifeline for almost 400,000 Americans, few outside this insular world have probed why a program with such compassionate aims produces such troubling outcomes. Even during a fervid national debate over health care, the state of dialysis garnered little public attention.

Over the course of more than a year, ProPublica reviewed thousands of inspection reports and interviewed more than 100 patients, advocates, doctors, policy makers, researchers and industry experts to get a grasp on American dialysis. The findings were bleak: At clinics from coast to coast, patients commonly receive treatment in settings that are unsanitary and prone to perilous lapses in care. Regulators have few tools and little will to enforce quality standards. Industry consolidation has left patients with fewer choices of provider. The government has withheld critical data about clinics' performance from patients, the very people who need it most. Meanwhile, the two corporate chains that dominate the dialysis-care system are consistently profitable, together making about $2 billion in operating profits a year.

One reason the system's problems have evolved out of the health care spotlight is that kidney failure disproportionately afflicts minorities and the dispossessed. But given a patient pool growing by 3 percent a year and the outsize 6 percent bite that the kidney program takes from the Medicare budget, we ignore dialysis at our own risk. "We're offering our patients a therapy we wouldn't accept for ourselves," said Dr. Tom F. Parker III, a Dallas nephrologist and national advocate for better care. More and more leaders in the field, he said, "are starting to say this isn't sufficient."

As the United States moves to expand access to health care, dialysis offers potent lessons. Its story expresses the fears of both ends of the ideological spectrum about what can happen when the doors to care are thrown wide open: Neither government controls nor market forces have kept costs from ballooning or ensured the highest-quality care. Almost every key assumption about how the program would unfold has proved wrong.

The Sharp End of the Needle

Henry Baer, right, with his mother, Violet Cunningham. Baer, 39, died from an antibiotic-resistant staph infection after his bloodline had become disconnected during a dialysis treatment. (Photo courtesy of Karen Gable)

Henry Baer, right, with his mother, Violet Cunningham. Baer, 39, died from an antibiotic-resistant staph infection after his bloodline had become disconnected during a dialysis treatment. (Photo courtesy of Karen Gable)

Henry Baer went in for his third dialysis treatment on New Year's Eve day in 2005. It turned out to be his last. He was only 39, but years of diabetes and high blood pressure had caused Baer's kidneys to shut down. Built-up waste and fluid were causing his limbs to swell and making him short of breath. He was sent for what's called in-center hemodialysis, the most common type of dialysis, at a beige-toned clinic near his home in Prescott Valley, Ariz.

His first two sessions were pretty normal. A patient-care technician hooked Baer to a machine the size of a filing cabinet, connecting it with plastic tubing to the catheter in his chest. He sat in a lounge chair, still as stone, for about four hours as the machine, whirring gently, moved his blood through a specialized filter, then returned it, cleansed of toxins. It was uncomfortable and boring. "Sis, this isn't for me," he told his older sister, Karen Gable, vowing to make himself a viable candidate for a kidney transplant.

Just over two hours into his next session, Baer's incoming bloodline "became disconnected," a federal inspection report says. The attending technician panicked, "yelling and screaming hysterically." Blood sprayed onto Baer's shirt, pants, arms and hands. Then, "contrary to emergency standing orders," the report continued, she reconnected the line to Baer's catheter, infusing him with "potentially contaminated blood." By the time Mike Wright, Baer's boss at a local car dealership, picked Baer up after the treatment, he was complaining of nausea.

Over the next two days, Baer spiked a fever. His wife found him in bed, having a convulsion. He was taken to the hospital, where tests later showed that his catheter had become infected with antibiotic-resistant staph. The infection moved swiftly to his heart and brain. He died a few days later, on Jan. 7, 2006, leaving behind a 2-month-old daughter. (Fresenius Medical Care North America, the clinic's operator, declined to comment on the incident, citing patient privacy rules. In 2008, without admitting wrongdoing, it agreed to settle a wrongful-death lawsuit brought by Baer's survivors.)

What happened to Baer was a worst-case scenario. Yet in some ways it is symptomatic of how dialysis is delivered. Medical supervision is minimal. Clinics must have board-certified physicians as medical directors, but usually have no doctor on site, and some struggle to meet the federal requirement of at least one full-time registered nurse. Technicians, who can start with just a high-school diploma and an in-house course (though they are later required to pass a state or national certification test), have been the field's workhorses for a generation. Medicare sets no staffing ratios for dialysis centers, and most states don't either.

Although some clinics are orderly and expert -- attentive not only to patients' health, but also to their dignity -- others are run like factories, turning over three shifts of patients a day, sometimes four. Safety experts say technicians shouldn't monitor more than four patients at once, but some operators save money by stretching them further. The pace can be so intense, inspections show, that clinics have allowed patients to soil themselves rather than interrupt dialysis for a bathroom break. One technician said he quit his job at a large Colorado clinic because he often had to juggle six patients or more. "The last two years, I was just getting old," he said.

Conditions within clinics are sometimes shockingly poor. ProPublica examined inspection records for more than 1,500 clinics in California, New York, North Carolina, Ohio, Pennsylvania and Texas from 2002 to 2009. Surveyors came across filthy or unsafe conditions in almost half the units they checked. At some, they found blood encrusted in the folds of patients' treatment chairs or spattered on walls, floors or ceiling tiles. Ants were so common at a unit in Durham, N.C., that when a patient complained, a staffer just handed him a can of bug spray.

Hundreds of clinics were cited for infection-control breaches that exposed patients to hepatitis, staph, tuberculosis and HIV. A Manhattan center closed in 2008 after cross-contamination infected three patients with hepatitis C within six months. Prescription errors were common: 60 clinics had at least five citations for them. In dozens of instances, patients died or were hospitalized after suffering hemorrhages like Baer's, when dialysis needles or tubing dislodged and staffers failed to adhere to safety guidelines.

Bill Peckham is a dialysis patient known widely for his blog, Dialysis From the Sharp End of the Needle. (Betty Udesen/ProPublica)

Bill Peckham is a dialysis patient known widely for his blog, Dialysis From the Sharp End of the Needle. (Betty Udesen/ProPublica)

Providers say they work hard to meet or exceed government standards, correcting deficiencies quickly when they surface and sometimes employing their own internal auditing programs. "You will find cases where things go wrong, but it's a small percent when you consider all of the hundreds of thousands of treatments every day," said Diane Wish, the CEO of a small Ohio dialysis chain and president of the National Renal Administrators Association, the group that represents dialysis facility managers. But patient advocates say conditions in some clinics have been problematic for so long that everyone in the system has come to accept it. "It's become ingrained that dialysis is expensive and dangerous and has terrible outcomes," said Bill Peckham, a patient known widely for his blog, Dialysis From the Sharp End of the Needle. "Once you're there, God help you. What do you expect? You're on dialysis."

Rise of an Entitlement

Dialysis entered the American consciousness in the early 1960s as the country's signature example of medical rationing. In those days, kidney disease killed about 100,000 people a year. Chronic dialysis was possible, thanks to two inventions: the artificial-kidney machine developed by the Dutch doctor Willem Kolff during World War II and a vascular-access device designed by Belding Scribner, a pioneering Seattle physician who opened the first outpatient dialysis center in the United States. But treatments were expensive, and most private insurers would not pay for them. At Scribner's medical center, the Life or Death Committee parceled out the few slots, weighing not only the health of patients and their income, but also their perceived social worth.

News reports about the committee's work sparked one of the earliest national debates over the right to care and put pressure on the government to step in. A turning point came when Shep Glazer, vice president of the largest patient group, made an emotional appeal to the House Ways and Means Committee as he underwent dialysis on the hearing-room floor. "If your kidneys failed tomorrow, wouldn't you want the opportunity to live?" asked the 43-year-old father of two. "Wouldn't you want to see your children grow up?"

The measure establishing taxpayer funding for treatment of end-stage renal disease, signed into law by President Richard M. Nixon, was expansive, and its lopsided, bipartisan approval reflected the times. Many lawmakers -- even conservatives -- thought the United States would adopt a European-style national health care system. Also, the program that took effect in July 1973 was expected to have about 35,000 patients and cost about $1 billion in its 10th year.

Those estimates came to seem almost laughable. The number of dialysis patients surpassed 35,000 by 1977 and has gone up from there. The growth reflected not only lower-than-expected transplant rates and the spread of diabetes, but also positive trends, like better cardiac care. With Americans living long enough for their kidneys to fail and no disqualifying conditions for the program, even the oldest and sickest patients increasingly were prescribed dialysis. Upwards of 100,000 now start treatment each year. "It's been a perfect example of that line, 'Build it and they will come,'" said Dr. Jay Wish, director of dialysis services for University Hospitals Case Medical Center in Cleveland.

Because the kidney program absorbed that unforeseen wave -- and thus prolonged so many lives -- some call it one of the great success stories of modern medicine. Still, the annual bill for the program quickly outpaced early projections, surging past $1 billion within six years. Per-patient expenditures were expected to drop as technology advanced. Instead they have risen steadily, as drug and hospitalization costs grew for the program's increasingly frail clientele.

Medicare has struggled to enforce quality standards for dialysis while meeting its prime directive of providing universal access. As the medical community's understanding of kidney disease grew, the government set biochemical targets for improving care. Clinics got better at hitting them, but overall rates of death and hospitalization have seen little change. And Medicare's record of making sure that clinics meet health and safety standards has been spotty. Clinics are supposed to be inspected once every three years on average, but as of October, almost one in 10 hadn't had a top-to-bottom check in at least five years, as shown by data from the Centers for Medicare and Medicaid Services (known as CMS). About 250 facilities hadn't had a full recertification inspection in seven years or more. Nursing homes, by contrast, must be inspected once every 15 months, and in 2006, CMS reported that 99.9 percent had been.

Even when inspectors find that clinics are not meeting government standards, the consequences are seldom meaningful. CMS can demand that facilities submit correction plans, but it cannot fine violators as it can nursing homes. The agency almost never imposes its toughest sanction -- termination from Medicare -- because clinic closures could hinder access to care. From 2000 to 2008, the agency barred just 16 dialysis facilities; federal regulations set no limits on how many violations are too many. "It's a judgment call," said Jan Tarantino, deputy director of CMS's survey-and-certification group.

When the Memphis University Dialysis Center was terminated from Medicare in June 2007, the step had been at least four years in the making. During that time, the clinic was flagged for dangerous conditions, inadequate care, higher-than-expected mortality rates and subpar clinical results. CMS threatened to yank the unit's certification in March 2006 and again the following year. Both times, however, even though inspectors continued to find problems, the agency allowed the clinic to stay open.

James 'Tug' McMurry, 66, died after suffering a devastating brain hemorrhage. Staffers at the Memphis University Dialysis Center, where McMurry received his treatments, had given him extra doses of a clot-dissolving medicine. (Photo courtesy of the McMurry family)

James 'Tug' McMurry, 66, died after suffering a devastating brain hemorrhage. Staffers at the Memphis University Dialysis Center, where McMurry received his treatments, had given him extra doses of a clot-dissolving medicine. (Photo courtesy of the McMurry family)

In April 2007, nine days after CMS sent the center a letter confirming that it was back in compliance, 66-year-old James "Tug" McMurry came in for treatment. When he had slow blood flow after being given his regular dose of blood thinner, staffers administered doses of a clot-dissolving medicine, according to a CMS survey. Later, a nurse told inspectors that a doctor had given a verbal order to administer the drug, but the doctor denied it, writing "This order was not given by me" on a form.

McMurry called one of his sisters, Betty Tindall, on his way home that day. "He said, 'They don't know what they're doing up there,'" Tindall recalled. A couple of hours later, McMurry's neighbor heard him bang on the shared wall between their apartments. "Help! Help!" he yelled. Paramedics found him slumped in a chair, vomiting. Tests at the hospital showed McMurry had suffered a devastating brain hemorrhage. By the time family members made it to his bedside, he was in an irreversible coma.

In an inspection three weeks later, regulators cited Memphis University Dialysis for failing to provide "safe dialysis services" and violating rules on the proper administration of drugs. They found multiple errors involving blood thinners, including one that resulted in the hospitalization of another patient. This time, CMS revoked the dialysis unit's Medicare certification, prompting it to close. "It took people dying before they did anything," said Bobby Martin, an attorney for McMurry's brother and sister-in-law, who reached a confidential settlement with DaVita Inc., the clinic's owner, in August 2009. (A DaVita official declined to comment on the case, citing patient privacy.)

CMS officials disputed the idea that they had acted too slowly. "Please understand that this is not an easy decision," said Jessica Jenkins, a spokeswoman for the regional office that handled the matter. "We're not in the business of putting facilities out of business."

Coke or Pepsi

Problems like those that regulators found in McMurry's clinic are partly rooted in economics. The government's payment policies for dialysis have created financial incentives that, in some ways, have worked against better patient care, while enabling for-profit corporations to dominate the business.

When the end-stage-renal-disease program began, hospitals provided most of the care on a nonprofit basis. But spurred by the guarantee of Medicare money, the marketplace met the growing demand for services through the expansion of for-profit companies. Today, more than 80 percent of the nation's 5,000 clinics are for-profit. Almost two-thirds of all clinics are operated by two chains: Colorado-based DaVita and Fresenius, a subsidiary of a German corporation that is the leading maker of dialysis machines and supplies.

From the start, the government's payment rules rewarded efficiency. Medicare set a rate for dialysis treatments, originally $138 per session, and covered a maximum of three treatments a week for most patients. Providers could keep whatever they didn't spend on care. There were no penalties for poor results and no bonuses for good ones. Unlike other Medicare rates, the payment wasn't adjusted upward for inflation.

Lawmakers cut the base rate to about $123 per treatment in 1983, after the program's cost came in higher than expected and audits showed providers averaging profits of more than 20 percent. Dialysis companies responded like any other business facing a drop in prices, said Philip J. Held, a nationally recognized researcher on kidney disease and an economist by training. They chopped expenses by shortening treatments, thinning staff and assigning tasks once done by nurses to unlicensed technicians. Some reused dialyzers, the filters that clean a patient's blood. "It changed the nature of the service," Held said of the rate cut. "You get what you pay for. The price was lower, but the product was dramatically different."

The government created another perverse incentive by allowing clinics to bill Medicare separately for certain medications, reimbursing them at a markup over what they paid drug makers. Dialysis companies embraced the opportunity: Doses of Epogen, prescribed to treat anemia, and similar medications tripled between 1989 and 2005, becoming Medicare's single largest pharmaceutical expense. "Their core business became giving patients injectable drugs," said Richard A. Hirth, a professor of health management and policy at the University of Michigan School of Public Health. "Dialysis was just the loss leader that got [patients] in the door."

Click to see how dialysis works.

Click to see how dialysis works.

Though lucrative for clinics, the drug boom -- much like the service cuts -- may have undermined patient care. A 2006 study showed that patients treated with higher doses of Procrit, a medication similar to Epogen, were at greater risk for heart problems and death than those who got lower doses.

As a whole, the government's payment rules have given big providers, with their economies of scale and purchasing power, a financial edge over smaller ones, spurring consolidation. DaVita and Fresenius each now have at least 1,500 clinics and more than 120,000 patients in the United States. No other operator has more than 300 clinics.

The chains say their deep pockets support quality initiatives that smaller providers can't match. "One of the advantages of being large ... is that you can invest in trying new things and being innovative," said Dr. Allen Nissenson, DaVita's chief medical officer. The Big Two are evolving into one-stop-shopping outlets for dialysis-related services: They run labs, pharmacies and clinics that specialize in vascular access. They have moved into the home-dialysis market and sell drugs used by dialysis patients. In 2009, the dialysis giants booked combined North American operating profits of $2.2 billion, their most ever.

In public financial filings, the companies say Medicare payments do not fully cover the cost of treatments and attribute much of their profit to the small minority of patients covered by private insurers, who pay substantially higher rates. DaVita says its margins are slimmer than those of the health care sector overall. In a March 2010 report (PDF), the independent Medicare Payment Advisory Commission judged pay for dialysis and related services to be adequate, calculating that in 2008, one-quarter of U.S. clinics had Medicare margins of at least 13 percent while another quarter lost money. The two largest providers averaged Medicare margins of 4 percent, the commission found, more than twice that of all others.

Some smaller operators are struggling. For the past several years, the Independent Dialysis Foundation, a nonprofit with nine clinics in Maryland, has run in the red. The founder, Dr. John Sadler, a pioneer in dialysis, said he has refused offers to sell because he believes independent operators offer a crucial alternative to chains. But Sadler admitted to a growing sense of futility. "Perhaps people like me are dinosaurs," he said. "I've always thought our focus on patients, not profits, was important."

Many within the dialysis world share Sadler's uneasiness with the dominance of for-profit providers overall and chains in particular. Over the past decade, stacks of competing studies have attempted to parse whether the quality of care at for-profit centers is equal to that at nonprofit centers, with no clear-cut answer. The expanding grip of DaVita and Fresenius may make such debates moot. Though the U.S. has more dialysis clinics than ever, patients don't necessarily have more choice. "It's Coke and Pepsi," said Joseph Atkins, who has been in the industry for 37 years as a technician, nurse, clinic owner, and consultant. "And in some places, it can be Coke or Pepsi."

'I Don't Have Nowhere Else to Go'

Even as government policies have encouraged the spread of corporate dialysis, they have largely denied consumers the chance to use market power to push for better care. Because Medicare is the dominant payer, it has information about dialysis centers that doesn't exist for other medical providers. Yet the Centers for Medicare and Medicaid Services has not made public key measures such as clinics' rates of mortality, hospitalization for infection and transplantation. Regulators know how dialysis units perform by these yardsticks. So far, patients don't.

Mark Schlesinger, a professor at the Yale School of Public Health, says the program has squandered an opportunity to be a model of patient empowerment. "In some ways, [dialysis] is where Medicare has the biggest footprint, but it's always been kind of a backwater," he said. "There's a perception that these patients won't take advantage of the opportunities."

ProPublica first asked CMS for the clinic-specific outcome data it collects -- at taxpayer expense -- two years ago under the Freedom of Information Act. The agency declined to say whether it would release the material until last week, as this story neared publication. It subsequently has provided reports for all clinics for 2002 to 2010. ProPublica is reviewing the data and plans to make it available for patients, researchers and the general public.

The reasons CMS has given for withholding the information until now is that some measures are disputed or lack refinement. Regulators and providers can put the data in perspective, officials had said, but patients might misinterpret the information or see it as more than they really want to know.

CMS's Dialysis Facility Compare website posts a handful of measures, including one for mortality, but does not give hard numbers. Instead, it categorizes patient-survival rates as "better than expected," "worse than expected" or "as expected." "Mortality is hard for individuals to face," said Thomas Dudley, who oversees Dialysis Facility Compare. "You don't want to scare people away." Peckham, the patient-advocacy blogger, scoffed at this. "It infantilizes people to say, 'We don't want to burden you with information and facts,'" he said.

Would more information make a difference? ProPublica was able to obtain outcomes data directly from the state of Texas for more than 400 clinics there. The material, covering 2007-09, reveals striking differences between clinics in close proximity.

Innovative Renal Care and Midtown Kidney Center, clinics about two miles apart in Houston, had similar stats on Dialysis Facility Compare in 2007, including "as expected" survival rates. But the full data show that Innovative Renal's average annual death rate -- after factoring in patient demographics and complicating conditions -- was 34 percent higher than expected. Midtown's average rate was 15 percent lower than expected. Dialysis Facility Compare has since changed Innovative's survival rating to "worse than expected," but how much worse? The unpublished 2009 data reveal that the clinic performed more poorly, versus expectations, than 92 percent of all facilities nationwide. Innovative Renal's administrator, Scott Sullivan, said the clinic had a difficult patient pool, but its most recent results have shown improvement. "We've put things in place to make sure those numbers are corrected," he said.

The information void feeds patients' general sense of powerlessness. Even activists such as Peckham or Lori Hartwell, who heads up the Renal Support Network, a patient advocacy group, say they often feel shut out of the biggest decisions affecting the dialysis system. As a group, those on dialysis have been less vocal and effective than other patient communities in pressing a cohesive agenda. Kidney failure is almost four times as common among African-Americans as among whites, and about one and a half times as common among Hispanics as among non-Hispanics. About half of the kidney program's beneficiaries are poor enough to qualify for Medicaid. Dialysis itself can leave many patients saddled with cramps, congestion and a sapping exhaustion. "You're a pile of mush that's barely getting through," said Cindy Miller, a former patient in Las Vegas who got a kidney transplant. "What do you want to do, file a class action? How many of these people are going to be alive long enough for that?"

Larry Hall of Wilmington, N.C., sits with boxes of documents, letters and photographs documenting his problems with dialysis treatments over the years. (Gary Allen/ProPublica)

Larry Hall of Wilmington, N.C., sits with boxes of documents, letters and photographs documenting his problems with dialysis treatments over the years. (Gary Allen/ProPublica)

When patients do take on the system, they can pay a heavy price. Larry Hall came home the evening of Nov. 15, 2007, to find the equivalent of a "Dear John" letter from an attorney representing DaVita, his dialysis provider. "Effective immediately," it said, "you will no longer be treated" at Southeastern Dialysis of Wilmington, N.C., where he had been a patient for more than nine years. Enclosed "to aid you in finding a new treatment facility," the attorney wrote, was a list of non-DaVita facilities. The closest one was 50 miles away, in South Carolina.

Hall had been dumped, or, in Medicare-ese, "involuntarily discharged." A burly, soft-spoken man who spent almost two decades as a uranium processor for General Electric, Hall, 51, was a hyper-vigilant patient who sometimes challenged clinic managers. Starting in early 2006, they pressed Hall to sign a contract that labeled him disruptive and required him not to "hand out anti-DaVita or anti-dialysis literature on the premises." Hall refused to sign and sued for negligence. The discharge letter arrived a few months later.

A DaVita spokesman said in an e-mail that the company did nothing improper and blamed the discharge on Hall's "escalating disruption and behavioral issues." The clinic continued treating Hall even after he sued, the spokesman said, adding that while Hall later won a $10,000 jury award for one claim, several others were dropped. Hall was forced to seek treatment at the emergency room of a nearby hospital, where he waited hours for stations to open up and for tests to show that his condition was dire enough to warrant intervention. Once -- short of breath and swollen with 16 pounds of excess fluid -- he says he was refused dialysis. Hospital workers put him in a wheelchair and left him in the lobby.

Regulators concluded that Southeastern Dialysis had violated Medicare regulations by dismissing Hall without advance notice. For now, Medicare officials have arranged for Hall to receive dialysis at the hospital. His treatments cost more than in-center care, and Hall worries the plug could be pulled at any time. "I don't know what's going to happen to me," he said. "I don't have nowhere else to go."

The Italian Solution

Reggio Calabria is not the sort of town where you'd expect to find world-beating health care. Dusty and poor, it sits on Italy's southern tip, at the end of a notorious highway that cost so much and took so long to build that it became a national symbol of inefficiency and corruption. The city's main public hospital has the tired grubbiness of a bus station. Its unit for kidney patients, however, typifies dialysis Italian-style.

Other countries provide universal access to dialysis care, much like the United States. But some, notably Italy, have better patient survival and cost control. Italy has one of the lowest mortality rates for dialysis care -- about one in nine patients dies each year, compared with one in five here. Yet Italy spends about one-third less than we do per patient.

These results reflect lower overall health care costs and a patient population with lower rates of diabetes and heart disease, but also important divergences in policy and practice. "The differences in mortality are staggering," said Dr. Daniel Batlle, who is a professor at Northwestern University's Feinberg School of Medicine and co-authored a 2009 paper on dialysis practices and outcomes in Italy.

As Dr. Carmine Zoccali, slim and white-haired, weaves through the 24-station outpatient unit in Reggio Calabria, patients recline on beds, chatting quietly or dozing. A doctor is present at every session, adjusting treatments and handling any complications. This is typical: A 2007 report showed that Italian dialysis patients had more than five times as much contact with their physicians as U.S. patients.

As Zoccali walks through the ward, nurses move between the beds, monitoring patients' vital signs and responding to the occasional bleat of a machine alarm. There are no patient-care technicians, Zoccali explains, and some regions set mandatory staffing minimums. His unit has at least one nurse for every 3.5 patients. Their expertise not only enhances safety, but also helps keep patients compliant with their treatment programs, Zoccali says.

Gianni Bertoletti, 57, has been getting his dialysis treatments in Bergamo, northwest of Milan, Italy, for almost four decades. (ProPublica)

Gianni Bertoletti, 57, has been getting his dialysis treatments in Bergamo, northwest of Milan, Italy, for almost four decades. (ProPublica)

Most of his patients get three treatments a week, but their sessions last at least four hours, more than the U.S. average. Extending dialysis by 30 minutes per session improves life expectancy, research shows, though many patients resist adding time. Zoccali speaks wistfully of a French clinic where patients get 12-hour treatments and have lower levels of hypertension than people with healthy kidneys. "The decision to make dialysis faster wasn't a scientific decision, it was a managerial decision," he says. "It's to allow you to do four shifts a day and make money." He schedules just two shifts a day to accommodate longer treatment times.

Zoccali and other doctors credit much of their success to the Italian practice of sending patients to specialists earlier than in the United States. There are fewer financial barriers to such referrals. Those with less-advanced kidney disease have equal coverage; patients don't need to have reached kidney failure. Intervening sooner "delays the need for dialysis and reduces the number of patients," said Dr. Francesco Locatelli, who oversees the nephrology and dialysis program at the hospital in Lecco, near Milan.

Patients tend to start dialysis in better overall health, he said, and more than 80 percent have fistulas, the type of vascular access least vulnerable to infection and clotting. In the United States, fistulas have become more common, but most patients still start out with catheters, often because they need dialysis immediately and fistulas take time to mature.

The economics of dialysis are fundamentally different in Italy, where public hospitals still provide more than three-quarters of the care. Regional health authorities pay more per treatment than Medicare -- roughly 50 percent more, the 2007 report found. But per-patient costs are lower because Italy's indirect expenses, particularly for hospitalization, are smaller and because coverage includes drugs as well as dialysis. A 2004 study found that Italian patients got half the average dose of Epogen given to U.S. patients, perhaps because there's no profit incentive to give them more.

Private operators have made inroads in Italy, especially where local health authorities have faced budget pressure. Areas with more private providers have so far had outstanding patient outcomes, but some practitioners think the statistics mask a more complex reality. "The private centers do the simple things, but when they have patients with complications, they send them to us," said Dr. Giuseppe Remuzzi.

Remuzzi has presided over the dialysis unit in Bergamo, an industrial city northeast of Milan, for more than three decades. Poking his head into one treatment room, he introduces four patients, all seniors, who have been getting dialysis together for 17 years. A few doors down, Gianni Bertoletti, 57, a wry, mustachioed man with blue wire-rim glasses, is halfway through his session. Bertoletti started coming to the unit in 1971. To Remuzzi, their longevity is proof that Italy should resist the U.S. dialysis model. "If we use the same system you do," he said, "our patients will start to have survival rates like yours."

Breaking the Chain

Despite the deep flaws in the U.S. dialysis system -- and the obvious ways that Washington could improve it -- big changes don't seem to be in the offing. Donald Berwick, the new administrator of Medicare and Medicaid, has not yet articulated his vision for the program, and health care reform leaves it largely untouched. The Institute for Healthcare Improvement, which Berwick co-founded, has worked to promote the use of fistulas, but a project director, Carol Beasley, has concluded that a piecemeal approach to fixing dialysis won't work. "It's unsatisfying to tinker with one broken part of a broken system," she said. Berwick, whom conservatives already accuse of supporting health care rationing, may not have the capital to push a more holistic approach.

So far, he's taken the step of endorsing the government's move toward payment reform. Starting next year, Medicare will pay a combined rate -- about $230 per session, subsequently indexed for inflation -- for treatments, drugs and other dialysis services, removing the incentive for clinics to overuse drugs. The end-stage-renal-disease program also will try for the first time to tie pay to performance: Under a proposed rule that takes effect in 2012, clinics could lose as much as 2 percent of their Medicare payments if they fail to meet standards for anemia management and dialysis adequacy, as measured by patients' blood tests. Dr. Barry Straube, CMS's chief medical officer, called these just the first steps toward addressing ongoing quality issues in dialysis "in a serious and fairly rapid manner."

Many industry experts doubt these changes will yield much. For one thing, they offer no financial reward for providers who deliver superior outcomes. Several observers also said the government is making a crucial mistake by rating performance by lab tests, not outcomes or measures that reflect patients' quality of life. "Mortality, morbidity, and infection -- that's the bottom line," said Joseph Atkins, the former clinic owner and consultant. "It's easy to adjust the labs. What good is it if you have good numbers, but everyone's dying or in the hospital?"

Bill Peckham, the dialysis blogger and patient advocate, has been dialyzing at home since September 2001. (Betty Udesen/ProPublica)

Bill Peckham, the dialysis blogger and patient advocate, has been dialyzing at home since September 2001. (Betty Udesen/ProPublica)

Increasingly, patients, doctors and advocates say that the way forward lies in focusing on alternative therapies, particularly those, such as home dialysis, that allow for longer and more frequent treatments. The biggest potential gains may rely on keeping people off dialysis in the first place. In that, the United States is falling miserably short. The incidence of kidney failure has increased by more than 80 percent since 1990; of the 40 countries that share data on this, only Taiwan and parts of Mexico have higher rates. "The centers are kind of the end of the line," Beasley said of dialysis providers. "They could deliver perfect care, but you still would be dealing with this tidal wave of people" coming into treatment.

A potential bright spot in health care reform, she said, is that extending better coverage to persistently under- or uninsured Americans could lead to earlier intervention for kidney disease. But as care expands and the national health care debate staggers on, our four-decade experiment with dialysis is worth bearing in mind. All too often, patients get caught in a vise between bureaucracy and the bottom line. As dialysis shows, guaranteeing access can come at a steep price -- in dollars and in lives.

Lisa Schwartz, a researcher at ProPublica, and Guido Romeo, a science writer in Milan, contributed to this report.

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anita mitchell

Nov. 9, 2010, 8:18 a.m.

I read a lot of medical literature.  There is evidence that the phosphates used to purge colons of contents prior to colonoscopy and sigmoidoscopy are causing renal failure.  Lots of medical literature on this. 

Then, there is the gadolinium used for MRIs.  It is used to enhance the image.  Gadolinium is also KNOWN to cause kidney failure (NSF is the term used in the literature) in patients who already have compromised kidney function. Ask for a kidney function test prior to an MRI (ordered with Gad) and I was turned down.  I was told it “wasn’t necessary.”  Even if you had a complete blood panel (Chem Eval) recently, your kidney status might have changed and you would think that a panel that revealed the functioning status of your kidneys directly prior to MRI with Gadolinium would be standard procedure, right?  Not so.  Not much of a conspiracy theorist, I still suspect that they don’t want a basline kidney function test proximate to the infusion of gadolinium because it makes winning a lawsuit for harm so much easier.  Okay before, not so good after.  Sometimes it take weeks or even months for the kidney damage to appear and when that happens not connected to the test.

Now, MRIs, newest generation, don’t use gadolinium!  But all those machines already in use are still earning money and still need to be paid for and continue they will. 

Some kidney failure is of “unknown etiology” and some a result, it appears, of our medical technology being imperfect and there being a huge financial incentive to order these tests with these imperfect systems.  Since the premier portion of the Hippocratic Oath is “Primum Non Nocere.”, “First Do No Harm” all this is ironic.

Corey Mondello

Nov. 9, 2010, 8:23 a.m.

Conservatives suggest that we should privatize outlets and cut more from the government, in turn, causing more chances for human errors while having less oversight? Well hot damn, that’s one way to save money…..kill off the patients.

Health Fraud Analytics

Nov. 9, 2010, 9:47 a.m.

“This case serves as a lesson in how the legal process, American taxpayers, and Medicare kidney failure patients can be simultaneously strangled by two branches of government, which have been forged into a butal weapon to undermine diligent investigations of False Claims Act fraud that are mandated by the Congress.”
Source: Introduction - Motion to Dismiss without Prejudice - Case No.: CV 08-2411 Hon. Richard Seebourg - United States District Court - Northern District of California - San Jose Division

I watcher my office manager suffer through ten years of dialysis and became convinced that the treatment he received was incompetent, at best.  His horrible experiences would fit right in with those depicted in this article.

ESRD Pt Nevada

Nov. 9, 2010, 10:33 a.m.

For the well meaning readers of this article (very long time in coming) please listen to a former dialysis patient with a history of 2 kidney transplants, dying twice, and experiencing over 50 operations before I left the world described in this article.
1.) Tiny Belgium, and a few other countries use a simple solution solve cost and the suffer described vs the previous outcome of kidney failure - DEATH:
a.) It is assumed that your organs are donated if you die when you enter a hospital UNLESS you execute a document stating otherwise OR IF AT ANYTIME a loved one or guardian says no to transplation of any organ. 
2.) CAPD treatment greatly reduces the risk and cost of hemodialysis. I have had hemodialysis, CAPD, and home dialsis.
3.) ESRD patients can represent a half living half dead existance because STAFF are under paid and trained, often with profit going mainly to the owners of the dialysis unit. Making a buck is the American way. Yes?

Yes you can chew up the SYSTEM. I existed in it until I received a perfect matched organ and I was out. I got out because I never accepted the doom and gloom of docs, staff, or patients and because I fought like hell to stay alive for my family - not for me.

Life is much better now. No docs and no dialysis.
I was very fortunate and I do all that I can to help others because I should be dead. 

Instead of making short off the wall comments about this very well written and detailed account of one part of ESRD. Please consider taking this article and sending to to others and to express an opinion where it counts - with the politican you elected. 

If you have a little time - maybe an hour a month - go to a local dialysis unit and volunteer. Just site with a patient and be a comfort.

Sorry for the long winded statement but I hope you get the point. ADD to the SOLUTION instead of bitching.

Thank you, ESRD NV

Arlene Mullin

Nov. 9, 2010, 11:33 a.m.

I am glad that this has finally come out. Patients have been dismissed as well as given contracts from the ESRD Networks.

The shame goes all the way up to when we instigated the Senate hearings in 2000. Senator Grassley (IA) who chaired the committee, turned a deaf ear when the hearings were over.

It has been a hard story to get out. It is a corrupt system that the govt has been well aware of.

Corey, so right. The old myth about “private” business being more “efficient” than public (gov’t) was blown out of the water in 2008 when the public (gov’t) had to bail out private financial industry that collapsed under the weight of their own greed. 

Now we’ve got a bunch of low-information Tea Party zealots that want to replace our Federal Government with for-profit capitalists, which will accomplish nothing but finish emptying our wallets with unregulated markets and just outright killing the po’ folks who don’t have any money for them to steal.

Before last Tuesday, the imbalance in wealth in America already qualified us for “banana republic” status; more Tea Party silliness will destroy our democracy and turn us into a fascist oligarchy.

A grim story.  Let’s hope it triggers a serious discussion.  I have been an esrd patient for 28 years (dialysis for 3, transplant for 9 and back on dialysis for 15 years).

However, the article ends on a very negative note.  The last sentence, “As dialysis shows, guaranteeing access can come at a steep price—in dollars and in lives.” is lopsided and partial.  The price of lack of access, in lives, far exceeds the price of guaranteeing access.  What we need to focus on is improvement in care quality and patient safety.

“Italy has one of the lowest mortality rates for dialysis care—about one in nine patients dies each year, compared with one in five here. Yet Italy spends about one-third less than we do per patient.” In the comparison with Italy, does it take into account that many countries will not allow patients over 65 or 70 years old to even begin dialysis? Whereas in the US you can be 80, 90 or older, and the mortality rate would be higher. I don’t know what Italy’s policy is regarding older patients.

From recent news: “Dr. Barry Straube is planning to retire from his position as chief medical officer at the Centers for Medicare & Medicaid Services on Jan. 31, 2011.
Straube, a board-certified nephrologist, was the Medicare’s CMO for the last six years, as well as director of the CMS Office of Clinical Standards & Quality.”  I never knew he was a nephrologist. What a sad state of affairs if even he could not improve the system from within.

Bill Peckham is correct. Patients need and deserve to know what they are in for. Knowledge is power and an informed, involved patients are their own best advocates. Our website, ihatedialysis.com is a place where patients come for the truth about dialysis. But if a patient is too sick or overwhelmed, who is their advocate in the maze of dialysis and renal care? Most clinics provide social workers, but many are uninformed and provide only what limited their employer allows.

I hope to see more articles regarding dialysis and transplantation. Thanks for tackling this complex but vital topic.

G. Edward hargis

Nov. 9, 2010, 12:50 p.m.

When I went to a center three times a week — I was a wreck. The long hard pulls left me gray and staggering well into the next day. I was pretty much useless.
But now, after my wife and I were trained for home hemo care, we do six two-and-a-half hour treatments per week.
I work a 50 hour week. I do chores. I have a life. What I don’t do is have hospitalizations from complications.
Doing treatments at home gives us a flexible schedule that fits our needs rather adjusting our lives to fit someone else’s schedule.
I no longer look like a sickly kidney patient. I look like a healthy person and all my blood work comes back saying that I am.

Iyabode Omimeji

Nov. 9, 2010, 1:01 p.m.

I am diabetic in stage 4 of CKD and doing everything I can to stave off dialysis. My nephrologist notified me when my GFR was at 22%.  Why didn’t he tell me when I was hit 50%.

I don’t think so many patients would be on dialysis if the doctors did preventative care diet, lifestyle. Our kidneys take a major hit because of our dietary habits and medications. Who knew Motrin and other over-the-counter products damage kidney function?

I believe nephrology is a crap-shoot. The doctors know about as much as they don’t know and dialysis is the a handy solution.

How can a 12 hour weekly mechanical process replace a 24 hour natural process?  It’s a joke. There needs to be more individualized care for kidney patients and not cookie cutter treatment designed by the two monopolies in kidney care.

I have just listened to the NPR interview of Robin Fields of ProPublica, who interviewed me for this article.  She is right on in her assessment of the US ESRD System and did an excellent job of presenting this article, particularly, from the patient’s point of view, which is rarely heard, or cared about.

A representative of CMS also had the opportunity to be interviewed by NPR, immediately after Robin.  Clearly, this gentleman was supporting the main stream ESRD industrial complex, particularly the big chains.

What people need to realize is that the large dialysis provider corporations lobby washington daily, and they throw millions of dollars to both Democrats and Republican candidates.  So, at the end of the day, polititians end up owing their financial supporters.  The bottom line is that money talks.  And, in my opinion, that money was working the gentleman from CMS like a sock puppet.

It’s true that the majority of people working in the field of dialysis do want to do a good job.  They want to provide the best care that they possiblly can.  However, when you have large corporations involved in care, the goal of the corporate officers and boards of directors is to maximize profit and keep the price of the stock, up.  In light of this, sometimes the patients’ needs take a backseat.

In talking with patients who are treated by large dialysis corporations, the general statement from patients is “we’re just a number” as far as their host dialysis units are concerned.

Let me be clear that making a profit in dialysis is not a sin, but, in fact, is mandatory, owing to the fact that you can’t continue to provide good quality care if you’re not making a profit.

My advice to the dialysis corporate industrial complex is to maximize the quality of care and put patients first, and then, everything else will fall into place.  You can make money and provide top notch care.

As for this article, it’s a great public service that has been done by ProPublica and The Atlantic and it should be a must read for kidney patients, their families and the dialysis industry.  No one should ever be afraid to look into the mirror and see what’s really going on in any indsutry, particularly when human lives are at stake.

A long time coming!  Thanks for your efforts we need to make sure it doesn’t fall on deaf or disinterested ears!  Thank you Thank you Thank you

Talk to a VA dialysis patient to get the real taste of goverment driven dialysis care.

Christopher Blagg

Nov. 9, 2010, 1:49 p.m.

In testimony to Congress about 30 years ago Dr. Belding Scribner, the inventor of the shunt that first made long-term, dialysis possible said “What started out in 1960 as a noble experiment gradually has degenerated into a highly controversial billion dollar program riddled with cost overruns and enormous profiteering”

He also said in the mid-1960s that if a patient was not rehabilitated the dialysis was inadequate.

He would have appreciated this very perceptive article but would have asked why home dialysis was mentioned, but not discussed, the best option for many more patients.

My husband was a non-compliant diabetic who spent the last 18 months of his life on dialysis at two DaVita clinics.  While he was largely responsible for his poor quality of life and refusal to cooperate, he endured an experience almost identical to the patients in this article.  If my kidneys failed, I would never opt for dialysis, and as cruel as it sounds, I feel if most patients could see how hellish their lives would become as ESRD patients, they’d opt for a peaceful death rather than dialysis.

sam bullard

Nov. 9, 2010, 2 p.m.

Has anyone at the Fed contacted Dr Moskowitz in St Louis, who for years has been able to keep patients off of dialysis machines so long as he is able to intervene before their creatrine levels get too high.

The dialysis machine industry has fought him tooth and nails, as one would expect them too.

But maybe now the time to give Dr Moskowitz a call.

michael kelley

Nov. 9, 2010, 2:07 p.m.

I’m 74 and have been a diabetic for about 30 years and I also take good care of myself.  I also know that many doctors are just pill-pushers who often do more harm than good for their patients with all the pills they push on these poor souls.  After being on diabetes medication for about 3 years I finally discovered that the medication was working counter to my body’s naturally ability to heal itself.  Four months ago I stopped taking all medications and as I detoxify I’m feeling better every day.  My doctor also had me on 2 high blood pressure meds so I bought a blood pressure monitor and my blood pressure is actually a little low.
Uncontrolled diabetes can lead to kidney disease and on to dialysis and many other diseases because of the greed and ignorance of the pill-pushing medical profession.

Mamie V. Jackson

Nov. 9, 2010, 3:12 p.m.

This is my second time on dialysis. I have had a kidney transplant for about 13 years and my life was much better. Transplantation is still the best option for organ replacement for most people who live on dialysis.  I have experienced all of the different dialysis modalities.  I did not do well with In-center short time dialysis-3-5 hours at a higher rate.  I went on Nocturnal dialysis for 8 hours and did so much better since this is a slower process and at a much lower rate of dialysis.  I later found out from my physician, Dr. Lee that this was the best modality next to organ transplant and he was right.  He showed us statistics to prove his point as well for a longer mortality for patients who did Nocturnal dialysis-dialysis while sleeping for 8 hours.  I have tried to advocate at my facility for this modality and explained why, but instead, my center has opted to focus on PD which can cause and infection and almost kill you and Home Hemo where you need at least two people or a committed one to help you.  A patient can not do Home Hemo alone.  It is dangerous and you can die if you have a problem with passing out or if your needle comes out, you can bleed to death as well.  Either way, most people can not afford to hire 2 people or do not have a spouse to or who wants to be responsible for another person’s life. There are so few Nocturnal dialysis centers because, the center don’t believe it is cost effective-even though it would be best for the patient.  Also, why can’t the company pay for the tech or nurse to come and do home hemo for patients who want this kind of treatment?  As you can see, I am very frustrated because, we, the patient, are not getting what we need from these facilities to get the best care for us, individually.  We do matter and should be treated with respect and listened to.  These companies only care about the bottom line. My treatments were changed without my knowlege and I had to fight and get them changed back. That was the best treatment for me.  I had to fight the entire time in my unit to get what I needed to take care of myself and was labeled a Diva and difficult.  So, I hope this this kind of practice is exposed and patients get much better care and get information about all options.  Many patients know nothing about their dialysis options and are not told by the Social Worker.  Dialysis staff are unhappy some of the time and we see that as well.  Many are too afraid to speak up or being afraid of being fired.  They leave when they can no longer tolerate it at a facility.  We lose some good staff sometimes.

I have said a lot because I have lived with kidney disease, diabetes and high blood pressure for over 46 years.  I run a nonprofit, licensed health agency in Los Angeles for the past 12 years and provide free urinalysis screenings for kidney disease, diabetes and high blood pressure to adult clients.  We provide educational materials as well.  We try to educate clients about these subjects including nutrition and organ and tissue donation.  These are all related and very important to the health of our communities.  All staff are volunteers and only licensed health care professionals provide health screenings and health education for clients. All services are free to clients.

Great article. I have a large group of dialysis patiens in my university based urban practice. It’s quite disturbing to see the way this population of patients, many of them unable to advocate for themselves, are treated. In many cases the low socioeconomic background and lack of healthcare is what caused these patients to ultimately experience kidney failure- an unfortunate result of uncontrolled hypertension and diabetes.  As one of my patients told me “kidney failure was the happiest day of my life because I was then able to get medicare which saved me dying of a colon cancer detected early by my colonoscopy. I would not have had the colonoscopy if it wasn’t for the medicare entitlement”

The business would be conducted much differently if the patients were from a different socio economic class. Despite the comment that physician supervision is not necessary for safe administration of dialysis, I frequently review cases of dialysis patients who are “evaluated” in such a cursory fashion by medical directors of the facilities-problems like large hematomas from dislodged needles and gangrenous lower extremities are missed. As one of my patients told me-its hard for them to notice a problem like this when they (the kidney doctor) don’t even look at me because they are in such a rush. The problem represents one aspect of a much broader problem that you touched on. That is health disparities that are more likely to occur in undereducated lower socio economic groups. My most urban patients frequently complain of the institutionalized indoctrination they receive at the facilities and the criticism that they are targeted with when they attempt to challenge the “norm”.


The industry represents another shameful case of greed that sacrifices the care of the least empowered members of our community for the profit of large companies Great investigation to shine a light on an important topic. A better level of care is possible-it would just have to sacrifice the margins that make this area such an attractive growth expansion market for the industry leaders

I was really glad to see this article about kidney
disease. I am in stage 4 and will have to start
Dialysis soon.  I have had people tell me it’s no
big deal but I always new better. I actually had
my doctor tell me that he had people who came in in the am for treatment and went to work afterwords. I have also had some people tell me that they were
so sick after that they couldn’t function at all. I have spent endless hours online reading everything I could about what I am facing down the road and the dangers of dialysis. Thanks for this very detailed article.

We can spend a trillion plus DEBT dollars on a war in Iraq based on false evidence but we are fine with letting Americans die at home for our cynical profit driven dysfunctional overpriced under delivering health care system. Costa Rica ranks higher in health care outcomes than the USA but we are the greatest…. wanna buy a bridge? :-)
Hypocrites. This is not anywhere near Christian in its ethos.

As a former home dialysis patient in 1978 - 1980, and having had two kidney transplants (1980 & 1992) over the past 30 years, there are a number of details in this story I could add additional information to or outright refute.

I was reusing Travenol 1500 artificial kidneys, as well as blood tubing - at home - in mid 1978.  We were expected to reuse the dializer & tubing up to 12 times, subject to pressure-testing before each treatment.  I was ENCOURAGED to go over my 4 hour treatments.  My helper (a good friend of mine) and I were a great team; I was a very healthy 20 year old when I began dialysis. On my days off, I water-skied, snow-skied, went dancing and was a “normal” 20 year old.

In fact, maybe I was a little too normal: My doctor suggested at one point that since I continued my menses (most female patients stop having periods when on dialysis.), that I have a hysterectomy to control that bleeding (my blood counts were low due to my primary kidney disease).  I said, “No… I’m going to have a transplant, and I want kids some day.”  It was my choice. I kept my uterus. And I did have that transplant (my brother), and I did give birth to 3 children, 28, 25 & 16 years old. Ha!

I knew people that “made it” through the Seattle Kidney Center’s “Life and Death Committees” in the 1970’s.  My first physician in Seattle was Henry Tenckhoff, inventor of the Tenckhoff Peritoneal Catheter (though I was a hemodialysis patient). I was not eligible for this catheter, since I had had abdominal surgery while a pre-teen. It didn’t matter, because in early 1978 I had surgery to create an access site for hemodialysis. An A-V fistula was created in my lower left arm. A fistula is an artery spliced together with a vein.  The vein grows in diameter with the increased blood flow, so the very thick - like a pencil lead - needle may be inserted for blood flow to be continuously looped through the Artificial Kidney hooked up to the dialysis machine. A dialysis machine is basically a great, big monitor for the artificial kidney and the blood tubing.

The upside:  I’ve paid taxes for 32+ years since my initial diagnosis. I’ve bought & sold 7 houses; I’ve worked in real estate and banking; and most importantly, I’ve had a quality of life unthinkable just 40 short years ago.

The downside? 40 years ago I would not have been selected for treatment by the L&D Committee; I was young; I was single; I had no dependents.  What a difference 6 short years made in my lifetime - a matter of life and death! I lived because my kidneys failed in 1978…

First i want to Thank Robin Fields for writing the story and Carl Ginsberg for his time and help. And thanks so much to Arlene Mullins and GOD i dont i would have made it this far if it was not for them.Because of Davita and there malpratice accident to me i had to get six painful surgeries. And to this day i need another surgery to my arm, but in a Jury trail i was only awarded $10.000.00 for over four years of pain and suffering. but my Attorneys fees was well over $25.000.00. its not hard too figue out when Dialisis Patient like me when they stand up to fight back only trying stay alive who is losing this battle .

Sorry to go against the grain but I have been on dialysis at a local chain’s clinic for over a year.  Compared to the large hospital where I received my first three treatments, these treatments are at a much higher level.  At the hospital, I suffered cramps, their use of “duct tape” left my arm blue from elbow to shoulder and was a much “colder” experience.  I have never felt that I was treated as a “number” but have received about as good care as I feel that I need.  Granted, I have had a few times when I received a little more blood thinner than I needed but I have learned to be somewhat proactive and observe what I am getting and get it corrected.  There are alwalys two RNs on duty and all techs seem to be fully trained and attentive.

Hopefully my experiences are not the exceptions but the general rule…

This article explains in detail why I, an RN, left the field of dialysis in the 1990’s with 20+years experience.
In addition, the machines have only grown more in size and complexity (suitable for clinic use) instead of smaller and safer for mobile use, quality of vascular access remains an issue (shame), and of course everyone keeps fooling around with formaldehyde…like that’s so good for everyone involved.

Thank you for this insightful and well-researched article. I have been on nightly dialysis for almost two years. I did not chose to go into a clinic for hemodialysis for many of the reasons you described, including sloppiness and lack of cleanliness. I rather perform peritoneal dialysis at home for 9 1/2-10 1/2 hours every night while I sleep. I am responsible for maintaining a clean and safe environment. Because I do, I have not been hospitalized for, nor have I had, an infection or dialysis-related mishap in these two years. I strongly encourage other patients to take charge of their own care, if they are able to do so.

Kristina McElhinney

Nov. 9, 2010, 9:19 p.m.

Just felt like I needed to clarify a few points from the first comment regarding gadolinium for MRI.

Gadolinium is associated with nephrogenic systemic fibrosis (NSF), a rare condition seen in patients with very low kidney function (glomerular filtration rate less than 30). The gadolinium does not actually harm the kidneys, rather patients have very poor kidney function prior to receiving the gadolinium and the gadolinium is then not excreted normally by the malfunctioning kidneys. This causes the gadolinium to collect in body tissues, which reactive by forming fibrotic, inflammatory tissue, hence the name nephrogenic systemic fibrosis. You may have confused this with contrast given for CT (CAT) scans, which can cause damage to the kidneys themselves.

Also, many tests done with newer model MRI machines still use gadolinium. The use of gadolinium is as a contrast agent, and newer scanners have not obviated the occasional need for contrast when evaluating many types of lesions/ disease states. Just want to make sure there isn’t too much disinformation spread about this out there.

I am a Nephrologist, and would like to congratulate Propublica in doing this investigation; as hopefully some thing good will come out of it, as more people are aware of the current situation.
  But I would like to point out that the tone of this article is too gloomy, as if anyone about to start dialysis in America will soon die of complications or unsanitary conditions at dialysis unit.
  If mortality is high among dialysis patients in America, what do they die from ? is it always from the direct complications of dialysis like catheter related infections OR is it from heart disease/Stroke. Studies show more then 2/3rd dialysis patients die from the heart disease. Nearly 4/5th of dialysis patients in USA have Diabetes or/and Hypertension as cause of their kidney failure, and these conditions contribute to heart disease mortality and morbidity.
  There many politicians, media personalities and sports persons, who have had kidney transplants or were on Dialysis, and did very well. Alonzo Mourning and George Lopez were on Renal replacement therapy and had kidney transplant.

Klemens Meyer

Nov. 9, 2010, 9:40 p.m.

The authors suggest that by reporting dialysis facility mortality as “higher than expected”, ”as expected” or “lower than expected”, rather than by reporting the value of each facility’s standardized mortality ratio, CMS is hiding important information. It is true that the classifications “higher than expected” and “lower than expected” do not express the size of the deviation from average; perhaps for facilities in these two categories, the standardized mortality ratio should also be reported. However, there is a very good reason not to report the standardized mortality ratio of a facility for which the value is “as expected.” The reason is that the mortality ratio will very rarely be exactly 1.0. It will usually be higher, or lower, and the value may be substantially higher or lower. The authors give the example of one facility with a mortality ratio 15% lower than expected (presumably 0.85) and of another with a mortality ratio 34% higher than expected (presumably 1.34), both reported as having “as expected” mortality. It is quite plausible that both were compatible with expected mortality. Most dialysis facilities are not very large. Large variations in standardized mortality ratio may occur by chance alone, and values may change substantially from year to year. The full Dialysis Facility Report, on which the Dialysis Facility Compare website is based, reports not only mortality ratios but the confidence interval, which expresses the uncertainty around the reported value. If the confidence interval includes the value 1.0, there is no reason to think that the facility’s mortality differs from what would be expected.  I direct a non-profit university-affiliated dialysis facility. Our staff are very experienced, with very little turnover, and physicians are in and out of the unit all the time. More than 75% of our patients have native vein arteriovenous fistulae. We’re almost European. In 2007, our standardized mortality ratio was 1.24, but the confidence interval extended from 0.8 to 1.85. In 2008, our standardized mortality ratio was 0.75; the confidence interval extended from 0.41 to 1.26. We didn’t do a better job in 2008 than in 2007; the facility wasn’t safer in 2008 than in 2007. Most dialysis facilities will have numbers like ours. Variations such as these represent noise, not signal, and reporting them is just a distraction. CMS made the right decision in reporting mortality ratios as it does. If publishing standardized mortality ratios changes patient choices about care, the vast majority of those changes will not be rational. I am not sure whether such change would represent empowerment or confusion.

Many years ago, I was preparing a talk about the quality of dialysis care. I wandered out of my office to the treatment area, and asked our very wise nurse manager what she would look for if she needed to find a dialysis unit for a friend or relative. “It’s the people”, she said. “Do they really care about it, is it their life’s work, or are they just passing through?” My own advice to people who need to choose among dialysis facilities is to use the list of questions on Dialysis Facility Compare as the basis for a conversation with facility staff and with the nephrologist. Will they take the time to talk to you, and how do they respond? Do they take you seriously? Are they open or defensive? Size them up. Your sense of our reliability and sensitivity is probably as good as any statistic.

You are not even close to painting an accurate picture.  I have worked in dialysis for 12 years and it would be nice to see the millions of great storied out there.  I can see you are not interested in reporting the good side.  If you would look at the data that is available on the network sites, you would see that some companies, such as davita, have improved outcomes and mortatility significantly even without performance based reimbursement.  Which by the way Davita is advocating for.  And have you even looked into the kidney trust - which is raising money and awareness to prevent the onset of dialysis.  YOu haven’t done your homework.

My grandfather died of kidney failure in the 1960’s.  They had the technilogy but I doubt if my mother’s father would have been even considered by the citizen panel that determined the rationing of dialysis. 

I was the joy of my grandfather and he was mine.  I miss him still today. 

Can I justify spending large amounts of a imited resource to extend the life of an elderly, retired, and loving person, when the same limited funds spent on prenatal care could have a greater result in human quality of life?  It is an unansurable question!
Unfortunately, a “bridge to nowhere” or a search for “wepons of mass destruction” use these same limited resources, without a benifit.  I can make that choice!

Keneth A. Fisher, M.D.

Nov. 10, 2010, 9:23 a.m.

I am a nephrologist, an author and once owned a dialysis unit.  I thought this is a well written thoughtful article about chronic hemodialysis.  Each patient is unique and needs tailored care to meet their individual needs.  To address the myriad of problems so well described in this article I have advocated a physician and nurse based review process that could advise and monitor care on an individual basis.  My plan is available on my blog, drkennethfisher.blogspot.com.

Roberta Mikles,RN Dialysis Patient Advocate

Nov. 10, 2010, 11:13 a.m.

On behalf of Advocates 4 Quality Safe Patient Care, we want to thank Robin Fields for her dedication and passion in this investigative reporting.  Having met Robin personally, her dedication and wanting to ensure that patients receive safe care was more than evident.  This exposure of what really happens in many units, is long overdue, as countless numbers of people are aware.  We hope that providers, legislators and those with government agencies, will realize, after reading this series, that a cultural transformation within units must happen in order to effect change.

Our website has the most recent 2010 surveys for California http://www.qualitysafepatientcare.com Frightening is that, for instance, if a facility has 60 patients, give or take, the sample is not more than 8, probably. One must ask, if a certain deficiency is cited for one patient e.g. wrong dialyzer, how many other patients outside of the sample had the same happen?

The lack of transparency, compared to other healthcare settings, is inexcusable. Many years ago we suggested during public comments, for the new ESRD Conditions, that facility survey reports be posted in a conspicuous place - the same as that which is required for skilled nursing facilities. Why this was not included??

Lacking transparency in other healthcare settings, still, is more transparent than CMS’ Dialysis Facility Compare.  Patients need to have full transparency in order to make informed choices when selecting a unit. In order for patients, and their loved ones to make - purposeful data.

The reality is such that there are more facilities, than we want to believe, that provide care that places patients in situations of potential or actual harm.How many preventable errors resulting in harm have happened and not been reported?  We presented data to Senators on the California Senate Health Committee. All included information was from California facility surveys, ESRD Networks annual reports and the CDC’s MMWR reports related to infections in the dialysis population. It was our understanding that providers/lobbyist blocked this proposed bill from being introduced, stating the information was not correct and that state-level oversight was not needed as the new Conditions were about to be released. However, the information was, in fact valid and the 2010 surveys, on our site, support that there is no difference in delivery of care since the new Conditions.  Perhaps now someone in California will take a closer look at that which patients are experiencing.

We continue to believe that the foundation for patients receiving quality safe patient care is to have effective unit-level supervision to ensure facility staff implement correct practices (facility policies/procedures and Conditions).

As I read about the patient who was involuntarily discharged, I was reminded how many patients are exposed to such. Patients fear speaking out to ensure they receive safe care due to various behaviors of staff that tell the patient ‘do not ever ask me again or question what I am doing’. Such behaviors as rolling of one’s eyes, shrugging one’s shoulders, making a facial expression, or a comment clearly state—no more asking or telling me how to do my job, by reminding me to implement a correct practice. In fact, my father, and I, both experienced such from some staff and even his physician.

Many problems within the unit are a result, in our opinion, of the ESRD Conditions and that which is mandated. When there are minimal requirements related to dialysis experience, for an RN who is in charge of a unit, giving direction to dialysis technicians, especially with no medical background, then one has to be even more concerned.

Further, dialysis technicians are given training/education then placed in the unit with a preceptor who is usually another technician. So, if the preceptor has bad habits, then the new technician learns same. We observed a preceptor not watching a new staff, or observing a new-to-dialysis staff when incorrect practices were being implemented. This is of even greater concern.

My father always said that those who work in healthcare should provide care to patients, the way they would want themselves, or their loved ones to be cared for. The negative care, both physically and emotionally that my father received far outweighed the quality safe care he received from some staff. A few, or several staff can make a difference. My father further stated that staff should walk in his shoes for just a day to truly understand what the patient experiences. No patient should experience the negative care, by some, that my father experienced. Until the dialysis setting changes its’ culture and ‘buys-into’ the fact that patients/families have a right to question care and ask questions, then things will not change. It is the patient’s life that is at stake here.

Roberta Mikles BA RN
Patient Safety Advocate
http://www.qualitysafepatientcare.com

Alan J Sorkey MS, MD, FAAEM

Nov. 10, 2010, 11:51 a.m.

I am a practicing emergency physician for more than 20 years.  It is a very rare shift indeed when I do not see a dialysis patient during my 12 hours on duty and usually I see several per shift.

The costs of the complications from end stage renal disease are very high due to the vascular problems you mentioned but you did not mention the costs due to the increased rates of infection due to the underlying ESRD itself, or in kidney transplant patients, due to the immunosuppressive medications.  This results in many expensive ER visits and hospitalizations.

Another significant cost not mentioned is due to patient non-compliance, from simply not following the renal diet/fluid restrictions resulting in fluid overload requiring an ER visit and emergency dialysis to blatant non-compliance with blood pressure meds and dialysis treatments and especially drug abuse with cocaine.  We see the same non-compliant patients over and over again resulting in costly ER visits, emergent dialysis treatments and ICU admissions.  I am aware of one non-compliant patient with at least 36 ICU admissions for fluid overload due to non-compliance in just the last year.  I would estimate his care during that time is in the hundreds of thousands of dollars if not more.

Finally there is an issue I’ve never seen discussed.  It is my understanding that after a patient gets a successful kidney transplant and is off of dialysis for 3 years, they are then considered “cured” of ESRD and taken out of the program and so cannot afford the anti rejection meds (roughly $1,000/month) and so the transplanted kidney then fails, they end up back on dialysis and back in the program and may even repeat this process more than once.  Not cost effective.

Gus Castaneda

Nov. 10, 2010, 1:44 p.m.

I’d agree with Dr Alan J Sorkey… dialysis mortality most likely comes from non-compliance.

I have had over 33yrs on dialysis and if you’d ask is it easy after so many years? Hell no! Along the way I have saw many people on dialysis, most were non-compliant, not showing up for treatment and most overloaded with fluid and/or not taking their binders.

It takes a very strong minded dialysis patient to learn and understand how to care for themselves with renal failure. Those are the ones most likely to live many years on dialysis.

Are you one of them?

Gus Castaneda
http://dailyhemo.org

This article is direct and clear. Dialysis can be made better, and we should work do that. Together, doctor and patient.
But this article is incomplete. In America, we accept anyone on dialysis, even someone with cancer, someone with dementia, or someone who is 90 years old. That is not true in the rest of the world. These dialysis patients with other severe diseases, in addition to their kidney failure, they will not live very long, because they are old and they are sick, not because they are getting poor care.

Aging as i am, trying to come to grips with the reality that I, just like everyone else, will die probably within the next 10-15 years.  Could be sooner, could be later.  I don’t know how many other people fear death but I do.  I fear it because I do not feel good about where my children are and the world they have inherited.  I would like to be at peace with the knowledge they will be okay and happy.  As it is now, sometimes all I can do is listen to their problems which are significant, one having an inherited disorder that could result in blindness.

You probably wonder why I’m writing this here when this is about dialysis treatments which I’ve never had and thankfully do not currently need but who is to say for the future.  I had a sister-in-law who did home dialysis for a couple of years I guess it was.  She passed away from infection (she had diabetes) she got in a foot/ankle injury that wouldn’t have been a big deal but for her diabetes.

I face an uncertain future as far as my future medical care goes.  I am on disability due to a car accident that left me impaired in some ways but fine in others.  But I live paycheck t paycheck, and I will lose my prescription coverage due, oddly enough, to cutbacks necessitated because of the requirements of Obama’s National Health Care.  My medications are at least $300 month so I will have to do without.

Which brings me to the fear I have of losing control of my life and my life choices.  The older I get the less “value” I have or productivity and I saw that mentioned in the “death panel” part of your report, that one of the things considered was how valuable you were in life. 

So anyway, reading this article I have mixed feelings.  On the one hand, needing to take these life-saving treatments (I guess if you need them there is no choice, no medication) and the seemingly inevitable “bottom line” that so much seems to depend on profit vs. loss, that results in substandard care because obviously it can be done better as evidenced in Italy for one.

This might sound cruel but I say it with the realization of my own mortality, these treatments however substandard are provided at no cost to people who otherwise could not afford them and would, I guess, die.

There are other diseases and conditions for which there is no national medical coverage.  Cancer treatments are expensive.  There are newly developed treatments not quite out of the investigative stage that might save some lives but unless you are wealthy you won’t be afforded those options.  Too bad, you die, maybe me someday.

My point is, and please don’t be offended, is that this care is not what it should be but where would you be without it?  Wouldn’t most of you already be deceased?  How does the government decide and/or justify what diseases and/or conditions it will pay for and which not?

Isn’t this dialysis, flawed as it is, better than the alternative.  It is better than what is being offered for other conditions.  So while I have empathy for kidney failure/dialysis patients I wonder how fair it is that your treatment is provided for you while others go without.  The gentleman who sued the company doing his dialysis, although I don’t know the exact nature of his complaints,  whatever his issues were with his treatment it was free and it was working so it almost seems rude to sue the hand that cares for you.

I am certainly in no condition to criticize anyone I’m just looking at it comparatively speaking and I guess its sad but isn’t it better than it could be.

Doing stuff around the house for myself I sometimes think that the job Ive done is “good enough for who its for (me)”.  Your care could be better obviously but it would cost more money that would be taken from what other funds?

Ultimately, if our politicians were not as dishonest and greedy as they are, our government would be in better shape and there would be no need to choose but that isn’t the way it is.

Life sucks sometimes and I empathize with all of you and hope you understand my point and consider it not as a criticism of anyone but as a somewhat pragmatic view of what is.

We at DialysisEthics advocated for Larry Hall.  It is amazing how we won’t deny a criminal food and water, but have no problem denying a dialysis patient a life-sustaining treatment for being “disruptive” - I never saw that in the penal code.

I am a nephrologist and have spent almost 10 years taking care of dialysis patients.
I agree with Dr. Sorkey, most of the cost associated with dialysis morbidity and mortality is due to non-compliance. I have hardly 10% patients in my practice who are compliant with their dialysis treatments and medications. Renal failure and being on dialysis is a tough thing, but it would be somewhat easier if patients are compliant.
Many of the stories in the above article are not fully investigated. Like the patient in TN who died of cerebral hemorrhage. There should be some other additional reason for his cerebral hemorrhage than just blood thinner use. If the same patient ended up in ER with chest pain and possible heart attack, he would have received much higher doses of blood thinners than what he received on dialysis. Then another patient who bled in the dialysis unit. The staff who hooked up his catheter again did a great mistake. But patients have to be careful as well. I have seen patients in dialysis unit who are told multiple times that they should be careful while moving their fistula arm, but they don’t care and move the arm anyway they want.
I think the writer of the article should interview practicing Nephrologists in the community and take their opinion rather than taking opinion of someone in big and famous hospitals who hardly see patients and are just in their offices making policies and doing research. The only reason this subject is getting so much air is that Medicare pays for the dialysis treatments. If you look at cancer patients and do cost analysis, the situation is grimmer than patient with renal failure. The treatment cost for cancer patients is much higher and outcomes are very poor.
I know that the private dialysis providers do make profit that’s why they are in business. Medicare pays them around $ 220 per patient per treatment which includes the entire treatment, all medications, food, TV, headsets and other things. Not all dialysis patients are disabled. At least half of them can drive. But all patients as soon as they go on dialysis the want disability, ride to and from the dialysis unit and home care for small things. The cost of actual dialysis is very less. The major expenses are in repeated admissions to hospital due to non-compliance and other accessory costs like transportation. I think the cost analysis should be broken down and one will find the cost of actual dialysis is not even 20% of the entire expense behind one particular patient.

I would like to respond to Dr. Smith, the nephrologist who posted above. True, many patients of all sorts are noncompliant. As a dialysis patient myself, I stopped going to support meetings because all the patients were overweight or obese. I thought, “If dialysis isn’t a wake-up call to lose weight, what is!” I, however, am a type 1 diabetic and heart patient who has been thin for most of my adult life. I am faithful about performing peritoneal dialysis every night for 9 1/2-10 1/2 hours without fail. I exercise at least an hour a day, eat organic and lots of protein. Compliancy is not the problem.

I have, however, been hospitalized many times over the years and have observed blood, syringes, and feces on the floor of my room—even after housekeeping left. Doctor errors, sloppiness, misdiagnosis, etc. kill at least 100,000 Americans per year, according to studies published in JAMA and elsewhere. Some put the number at 250,000. There is enough blame to go around, for sure!

It’s frustrating to hear doctors blame the shortcomings of a system on patient non compliance.

Whatever fringe of society an emergency room doc has to deal with, they are not a central issue in the provision of dialysis. They are not central to the cost of dialysis. And they are not central to the problems experienced by those who use dialysis.

How much of the inability of people to accommodate the fluid restriction is due to unit practices such as sodium modeling? Or too short treatment lengths? Or in adequate nutritional counseling?

If you tell people their situation is hopeless, can you be surprised when they’re listen?

Roberta Mikles RN Patient Safety Advocate

Nov. 10, 2010, 11:33 p.m.

As a Patient Safety Advocate, I would like to address Dr. Smith’s comments. I recently read survey findings of a facility in California -(located at http://www.qualitysafepatientcare.com )  whereby a patient was hospitalized for fluid overload. The technician did not report, for many treatments, that the patient was leaving above EDW, thereby, resulting in hospitalization. I can state, after speaking with hundreds of patients that the following are problems, additional to that which Bill Peckham stated. Patients complain that they are not given full information from the Dietician. They are handed a paper with values on it with no detailed information. Some have stated a language barrier exists in some facilities. Staff miscalculate fluid removal or do not count the fluid intake during dialysis or even count the fluid given if the patient requires saline.  If a patient is noncompliant there often are not staff interventions to find out why, perhaps if there was more staff concern when patients are noncompliant we would see less, instead of labeling patients.  Dr. Smith’s statements are clearly generalizing dialysis patients. I think that Dr. Smith should take a closer look at patients and give them credit for enduring some of the care that is delivered during treatments. Further, again, in all due respect, have you ever asked a patient why he/she is moving their arm when told not to? Maybe it is VERY uncomfortable to sit for 3 - 4 hours without moving? It is not easy to sit in a chair without moving. Let’s not paint the wrong picture of patients. I know many patients who started dialysis and were upset and frustrated because their physicians told them not to work and they wanted to. I have known patients who could not get the scheduled time to meet their work schedules and lost their jobs.  Not all patients want disability when they start dialysis. There are many patients who, due to their condition, can not work, but they want to.
If you take a close look at the surveys you will see there are problems with staff implementing facility policies and procedures that might lead to hospitalizations.
Roberta Mikles RN
Dialysis Patient Safety Advocate

Dr. Smith’s comments are typical of what I have seen over almost 40 years as a diabetes, then heart, then dialysis patient. When I first became a home peritoneal dialysis patient, I underwent a week of training. Nurses and doctors were continually saying insensitive things, e.g., “We all have to deal with what life deals us. I, for example, probably would have been happier going into another kind of medicine, but I’m here. You just have to deal with it.” As if trading one lucrative field for another is in any way comparable to being on nightly dialysis! Nurses also thought MASH humor was acceptable—telling me stories of cats pulling the dialysis tubing out of the patient’s abdomen! Initially, I had wanted to use the clinic personnel as a resource, but I soon found that advice was often inconsistent, wrong, or even dangerous. Nurses were primarily concerned with covering their behinds rather than providing any meaningful emotional or practical help for the patient. I am obligated to go into the clinic once a month, but besides from that, I avoid any contact. I figure things out for myself as much as possible. My overall impression of dialysis healthcare providers is that they have absolutely no idea of what day-to-day life is like for patients, nor do they want to hear about it. Though I am a very assertive and vocal person, I often get the impression nurses and docs think of me as somehow less than human, not wanting or needing, say, to have a social life or anything resembling sex or even a good night’s sleep without the dialysis machine’s alarm going off. I always wonder, What would happen to a patient who heeded all this conflicting and wrong advice? How would a patient who wasn’t as questioning as I am fare? She would probably be dead by now.

It’s so easy to blame the patients. Blame them for getting ESRD and blame them for non-compliance creating more problems with dialysis. It’s tough to live with anemia, needles in your arm 3 days a week, diet limited, fluid limited, disfiguring surgeries, your life changed forever. It can be very depressing. No one would choose this life, but there are thousands of people who make the best of it. And there’s an equal number who cannot cope, have repeat health problems and fight to stay alive. So what is the answer? Belittle them, as some in-center nephs and nurses do, or shame them, as some dieticians do, or ignore them, as some techs do?? There are some really wonderful medical professionals in the field of nephrology, but the dialysis world could be so much better. I hope people will listen and read and learn more from these news articles. How about some compassion??

In response to Christopher Blagg, whom I deeply respect, I agree with everything you said.  As for home hemodialysis, you and I’ve been in the business long enough to know that that is where dialysis began.  Back in the 60’s and 70’s, you didn’t have a dialysis unit on every corner.  In fact, there were so few dialysis units available, that there were committees put together who decided who would be eligible for an available seat and time to dialyze.  For that reason, if you wanted dialysis, you might have to dialyze at home.  It’s a proven fact that patients who dialyze at home have a higher quality of life, lower morbitity and mortality, fewer admissions and fewer infection.  As well, many of these patients gain back there sex life and some are even able to go back to work.  Sadly, in the 80’s and 90’s, as well in this decade, we’ve created what I call ‘cattle call-Jiffy Lube dialysis.’  Getting patients on the dialysis machines has turned into the running of the bulls.  Many chains only give their staff 15 minutes to get a patient off, out the door and the new patient on the machine.  With an older and sicker clientele, this simply isn’t safe.  As well, dialysis staff in large chains are being forced to carry a higher patient ratio, sometimes as high as five or six to one, which is not safe, period.  The good news is that, with the advent of the NxStage home dialysis machine, hemodialysis is returning to the home.  NxStages technology, which has a well established safety record, allows patients to dialyze six days a week for 2-3 hours each treatment.  If you’re asking yourself why someone would want to dialyze six days a week, you need to remember that healthly people have kidneys working 24/7, which equals 168 hours per week.  On the other hand, a patient on in-center hemodialysis, three to four hours, three days per week, is only receiving 9-12 hours of treatment.  As well, the cycle of ups and downs in fluid, chemistries and waste by-products turns into a horrible rollercoaster ride of misery.  Patients on daily home hemodialysis, which is carried out six days a week, have better control over the three parameters listed, above.  I forgot to mention, earlier, that patients on daily home hemodialysis take fewer medications, having better control over their blood pressure and phosphorus.  As well, patients on daily home hemodialysis require less epotietin, which is a very expensive drug that treats anemia caused by kidney disease.  And, last, but not least, patients gain more control over their lives, which promotes independence.

As dialysis units get used to the new Medicare ESRD bundled payment process, I believe that they will begin to direct more patients into home hemodialysis, if for no other reason, than it will save them money in staffing.  Two registered nurses are capable of overseeing up to 40 home patients.  The patients, with a partner, do their own care.

Dr. Blagg, home hemodialysis is coming back and I believe that, eventually, it will come back in a big way.  It’s only a matter of time.

Thanks to ProPublica for the article.

This is yet another Catch-22 situation.  There are advocates for and against each side.  Do we, as a nation, decide that we let these people die, or make treat them.  Who should make the decision?  If there is a financial profit to be made, should the profiteers be allowed at the decision making table.  ETC.

I am pretty sure some will say that we (as a country) can no longer afford for the government via our taxes to continue to support this process, so who will be eliminated.  Who decides, as within any group, there are good and bad and so, who comes to the table? 

Consider only one small part of the problem:  Anemia.  Is it more cost effective to treat this “unintended consequence” with drugs or transfusion.  Which is safer, which does less harm.  As a transfusion service supervisor, we do support patient’s, who at the end of the treatment receive transfusion.  Most outside this field know little to nothing about how this process works, but it is never as straight forward as it appears.  Drug therapy:  easier and faster to administer, but is it a guarantee and safe, no unintended consequences?

Compliance:  does anyone work with for those who are deemed non-compliant, or do theses individuals get labeled and then scorned and written off.  In a discussion about Healthcare, one physician pleaded for Mental Health coverage, as a way to have the time to actually talk and educate these patient’s.  Saying “you have to do this” may not come across as education. 

Some will say they have observed the non-compliant and how they are a drain on the system.  What some call education may not be interpreted by the patient as intended.  Has anyone who complains about these individual actually taken the time to try and understand why these individuals are non-compliant, could there be barriers that need to be overcome by the educators, but there is no time (or money or desire) to address the underlying failure.  Quality Compliance professionals will say yes, but they too are faced with conflict, as they have only so much time and have to deal with budget, oversight, compliance/regulations as well as patient’s.

As with anything in life, there are winners and losers and most of us fall somewhere in between.  I don’t have an answer, but if a decision is made on how to “improve” the ESRD treatment v. cost.  If you eliminate legislator’s who know very little about the entire process and lobbyists who advocate for mostly “profit”, who does that leave us to make the decision”  Patient advocates?  Then in order to make the process improve, it has to go through the DC legislature, which then involves legislatures who don’t know and lobbyists who seek to provide these legislator’s with a distinct POV.  We then arrive back at the starting point.

I work at a University Hospital, and my Medical Director once said, “we are leaving money on the table”, meaning that government funding should be a major part of any decision making process.  Once they had figured how to assure that we had garnered the most dollars, then we could design our quality systems and processes around that process.

Is the model broken beyond repair?  Do we just throw our hands up in total frustration?  ESRD treatment is a great example of how the system, that may have been designed for altruistic reasons has been “gamed”.  If improvements for this system can be improved, really improved - as it originated to be all about patient’s, not profits, then I hold out hope.  Otherwise, we will continue to feed an insatiable monster (that I leave you to define).

What this article doesn’t account for is how Americans end up on dialysis in the first place.  Its not a problem with the providers, its a problem with our society and patients as a whole.  Because the vast, vast majority of dialysis patients are indigent in the first place, they first do not have the range of healthy eating options that Europeans do, and second are not able to seek medical treatment until something is very, very wrong with them.  At that point, its not a matter of preventative care for patients—there is no opportunity for them to stave off dialysis—they must receive it immediately and regularly until the end of their life.

Please don’t automatically damn dialysis providers.  Providers are incentivized to keep patients alive and well—the better a patient is clinically, the longer they live in general, and the more money the provider makes.  Its in everyone’s best interest for patients to live long, healthy lives.

The vast majority of patients are not indigent.

Illness is a risk for poverty, and poverty is a risk for illness ..., it isn’t always easy to discern cause and effect.

We know that 75% of people using dialysis have Medicare as their primary insurance. In order to qualify for Medicare you have to have worked the requisite number of paid quarters (or have a spouses who worked), Right now the requirement is for 30 paid quarters of work - 7.5 years of work.

That isn’t a group prone to indigence.

I agree with Bill Peckham, the great majority of dialysis patients aren’t indogent.  The fact that “Provider” is trying to identify the majority of ESRD patients as “indogent” tells me that this person is out of touch with the patient population he/she is serving.  It’s attitudes like “Provider” that bring negative feelings toward providers.  Patients don’t elect the lifestyle that comes with ESRD.  As for damning providers, I don’t think any article has to do that when you are as arrogant and defensive as “Provider.”  There is always room for improvement in the care that we provide our patients, particularly, when patients feel that they are losing their humanity and becoming numbers in a system.  For decades, I’ve seen patients pretty much marginalized, especially in their dealings with the renal networks.  The renal networks get 50 cents out of every Medicare provided treatment in their network areas.  These people are living the good life, eating lobster and caviar and putting themselves up in hotel penthouses.  In the meantime, they are also cutting the services they’ve historically provided for patients.  There was a time when dialysis patients, via the networks, had to have a patient representative on each shift, serving as an “ombudsman” for the patients.  If a patient had a complaint or problem, they could go to their rep and then that information was passed onto the renal administrator of the unit, or, if needed, to the renal network.  Well, providers, particularly the larger corporations, didn’t like that.  They complained and now those patient rep programs have gone away.  You see, nobody really wants to hear complaints from patients and families.  What providers want is quiet, compliant patients who should simply be happy they’re getting dialysis, at all.  It’s this arrogant, keeping patients quiet attitude that demands that an article, such as this one, be written.  Big providers have millions of dollars to lobby polititians and advertise.  They have access to the media to present their points of view.  Patients had the renal networks, which are now superfluous.  All the renal networks do now is suck up 50 cents per treatment.  They have forsaken their primary intent, which was to make sure all the dialysis units in their networks were providing good care, and providing representation for the patient.  Now, it’s just an old boys & girls club, where eveyone pats each other on the backs, telling themselves what a wonderful job they’re doing, as the slop down the steak, lobster, wine and cheese.

This article is part of an ongoing investigation:
Dialysis

Dialysis: High Costs and Hidden Perils of a Treatment Guaranteed to All

Nearly 40 years after Congress created a unique entitlement for patients with kidney failure, U.S. death rates and per-patient costs are among the world's highest while the biggest for-profit providers flourish.

The Story So Far

Dialysis holds a special place in U.S. medicine. In the 1960’s, it was the nation’s signature example of rationing, an expensive miracle therapy available only to a lucky few. A decade later, when Congress created a special entitlement to pay for it, dialysis became the country’s most ambitious experiment in universal care.

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