By Robin Fields/ProPublica
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. Oh, 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?
In October 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 for starters, and for a modest initial price tag of $135 million, 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 kidney 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, I 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 care. 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 withholds 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 that dialysis’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, a Dallas nephrologist and national advocate for better care. More and more leaders in the field, he told me, “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 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, Arizona.
His first two sessions were pretty normal. A patient-care technician hooked Baer to a filing-cabinet-size machine, 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, pushed his blood through a series of filters, 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 January 7, 2006, leaving behind a two-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 egregious, a worst-case scenario. Yet in some ways it is symptomatic of how dialysis is delivered. Medical supervision is minimal: clinics 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 told me 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. I 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, North Carolina, 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 facility 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.
A stratum of dialysis clinics has operated this way for so long, patient advocates say, 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.”