Judges’ comments:
A stellar piece of journalism. The series reveals that the results of dialysis care in this country are atrocious, despite enormous outlays by U.S. taxpayers. Great multimedia features, including one that lets readers check the quality of care at dialysis centers in their area.
1. Provide the title of your story or series and the names of the journalists involved.
Dialysis: High Costs and Hidden Perils of a Treatment Guaranteed to All
Robin Fields
See the story on the web and some of the data and graphics that accompany the investigation: Dialysis Facility Tracker
Inside a Dialysis Treatment
Compare Dialysis Facilities
2. List date(s) this work was published or aired.
The first story in this series was jointly published by The Atlantic and ProPublica on November 9, 2010. The rest were published by ProPublica on Nov. 10, Dec. 9, Dec. 22, Dec. 23 and Dec. 28.
3. Provide a brief synopsis of the story or stories, including any significant findings.
Dialysis holds a unique place in American health care. In the 1960s, it was the country’s signature example of rationing, an expensive miracle therapy available only to a chosen few. A decade later, when Congress created a special Medicare entitlement to pay for it, dialysis became the nation’s most ambitious experiment in universal care. Today, dialysis is a lifeline for almost 400,000 Americans. Yet, until our series of stories about this insular patch of health care, few outside of it were aware that — despite massive outlays by U.S. taxpayers — Americans endure some of the worst results for dialysis care in the industrialized world. One in four patients dies within 12 months of starting treatment. Those who survive often suffer high rates of hospitalization and poor quality of life. If our system performed as well as Italy’s, or France’s, or Japan’s, thousands of lives would be spared each year. We spent two years examining dialysis from every angle to uncover how a system born of compassion has gone so very wrong. Our stories showed that patients commonly received care in settings that were unsanitary and unsafe. Treatment chairs were caked with blood or crawled with insects. In hundreds of instances, breaches in infection control exposed already fragile patients to hepatitis and other communicable diseases. Medication errors were routine. In the most egregious cases, we found, patients were killed by the very therapy meant to sustain them. After Henry Baer’s dialysis line disconnected, spraying blood everywhere, a panicked technician hooked it back up, exposing him to an infection. Baer, 39, died a few days later when antibiotic resistant staph attacked his heart. James “Tug” McMurry, 66, was given dose after dose of powerful blood thinners and succumbed to a massive brain hemorrhage. Barbara Scott’s bloodline separated during treatment after clinic staffers failed to follow rudimentary safety procedures. The 73-year-old retired bookkeeper went into shock from loss of blood, was hospitalized for weeks, and then died of heart failure. Many incidents in which patients died or were injured in the course of treatment were never reported to — or investigated by — any outside authority. On paper, dialysis care is regulated by federal and state health agencies. But Fields discovered that in many parts of the country, regulators have fallen far behind on dialysis clinic inspections, allowing problems with care to fester. Even when such problems were exposed, toothless enforcement enabled facilities with flagrantly poor track records to keep operating, despite showing time and time again that they could not or would not meet minimum health and safety standards. We showed that although dialysis is paid for mostly by Medicare, corporate providers have come to dominate the system, squeezing billions of dollars of profit from it by taking an assembly-line approach to care. Government payment policies have compounded these issues, creating perverse incentives that have undercut quality and spurred a sweeping industry consolidation. With fewer providers to choose from, patients have been left achingly vulnerable. Larry Hall voiced complaints about his care and was involuntarily discharged — Medicare-speak for dumped — by his dialysis provider on less than 24 hours notice, Fields found. He ended up in the emergency room, waiting for hours until tests showed his condition was dire enough to warrant intervention. In the course of our reporting, we came across another stunning fact: For years, the federal government had collected a rich store of data about the performance of each of the nation’s thousands of individual dialysis facilities. Yet it had kept nearly all this information secret from those it might benefit most: patients. After doggedly pursuing this vital database for more than 27 months through persistent reporting and Freedom of Information Act requests, Fields finally succeeded, late in 2010, in getting the government to release the clinic-by-clinic data. In December, it was posted in searchable form on ProPublica’s web site, where already thousands of patients have used it to see how their providers compare to others.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
More than 100 FOI and state public records requests were needed for this investigation. To get a handle on what patients experience day to day, we obtained eight years of inspections records for more than 1,500 clinics from coast to coast. We requested these documents under open records laws and created a database of our findings from them We also requested previously undisclosed facility-level outcome data under the Freedom of information Act, ultimately receiving data for more than 5,000 dialysis clinics nationwide.
5. Explain types of human sources used.
Fields interviewed more than 100 patients, advocates, doctors, academics, industry leaders and regulators for these stores. She traveled to Italy to observe an alternate model of care, interviewing leaders in dialysis care there. She also visited centers and observed treatments.
6. Results (if any).
In December, clinic-by-clinic outcome data was posted in searchable form on ProPublica’s web site, the first time such information was made public. Thousands of patients have used the site to see how their providers compare to others. Performance disparities among clinics can be vast. In more than 200 counties, to take just one example, the gap between facilities with the best and worst patient survival, adjusted for case-mix differences, is greater than 50 percent. Instantly, the availability of this information ushered in a new era of accountability for the more than 5,000 dialysis clinics nationwide. For the first time, patients have the option of directing their care to the best-performing locations, thereby putting pressure on the laggards to improve or go bankrupt. And government overseers will be motivated to step up inspections of bad performers, lest they be called on the carpet. In the wake of Fields’ investigation, Sen. Charles Grassley, R-Iowa — perhaps Washington’s most vocal watchdog over health care — has demanded answers from the U.S. Centers for Medicare & Medicaid Services about clinic conditions and the lack of effective regulatory oversight. The stories also have had a galvanizing effect within the dialysis world and beyond it, unleashing a cascade of reactions, blogging and related articles in the national and local media and trade press. “These articles may strike the collective conscience of those who prescribe, oversee, pay for, and administer dialysis treatments in a second rate, short and violent manner unique only to America,” wrote Dr. Peter Laird, a well-known dialysis patient and specialist in internal medicine, in a blog post titled “Why the ProPublica Dialysis Series Matters.”
7. Follow-up (if any).
Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain. Dialysis company officials and one official at the Centers for Medicare and Medicaid Services have been interviewed by others, complaining that the stories painted an unfairly grim picture of dialysis care. No specifics on accuracy have beengiven, however, and have not pointed to errors of fact in any of our stories. There have been no corrections or clarifications.
8. Advice to other journalists planning a similar story or project.
The strength of these stories was that they gave an authoritative, global view of a system that typically has been looked at in fragments or anecdotally. The depth and breadth of the reporting allowed us to come to powerful, indisputable findings. The other critical element was persistence. The Centers for Medicare and Medicaid Services initially declined our request for clinic-by-clinic outcome data, claiming it did not have “possession, custody and control” of the material. Robin Fields did not accept this response — instead, she attacked it, requesting it from all 50 states. When state officials responded that the data belonged to CMS, Fields presented this evidence to CMS and the federal government was forced to reconsider its decision.