Preventable Deaths in Nursing Homes

October 16, 2002

Post-Dispatch Series on Preventable Deaths in Nursing Homes

Since last Sunday (October 13), the St. Louis Post-Dispatch has been running a week-long series called "Neglected to Death: Preventable Deaths in Nursing Homes." The following article in the series, about the ombudsman program, was in Tuesday's edition. You can access the entire series on the Post-Dispatch web site:

Ombudsmen often feel powerless in efforts to blow the whistle
BY PHILLIP O'CONNOR
10/15/2002

In 1972, Congress passed a law that legislators believed would help end deadly care in America's nursing homes. It mandated that each state set up an ombudsman program to identify and investigate complaints in hopes of preventing the neglect and abuse that were harming the elderly in the facilities paid to care for them.

Thirty years later, the deaths continue throughout the country, and ombudsmen frequently find themselves powerless to protect the elderly.

More than two dozen ombudsmen interviewed by the Post-Dispatch from coast to coast say their attempts to blow the whistle on bad care are often dismissed by state regulators and demeaned by the nursing home industry. Their efforts, mandated by Congress, to push for legislative improvements are often ignored by lawmakers in their own states.

"Our goal is to prevent harm to residents," said Esther Houser, Oklahoma's state ombudsman. "It's a mandate, but it's been terribly, weakly enforced, and it's been either ignored or abused in many states."

A report in 1995 by the Institutes of Medicine, which does research for the federal government, backs her assertion, declaring that any success by ombudsmen occurred "despite considerable barriers in most, if not all, states."

While Congress created the program with high hopes, it didn't provide ombudsmen with much power. Instead, their role is to advise residents and their families of their rights and to resolve resident complaints. In cases of poor care, they often must rely on regulators to intervene. Their only power is the power of persuasion.

"They can't make a facility do anything," said Alice Hedt of the Washington-based Long Term Care Ombudsman Resource Center.

Still, Hedt and others laud the work of ombudsmen. Hedt says she would hate to see the condition of nursing homes if the program did not exist.

In 2000, ombudsmen responded to more than 232,000 complaints, the most frequent being lack of resident care because of inadequate staffing.

The federal legislation that created the ombudsmen initiative left it to each state to choose its own type of program. States, in turn, often left it to cities or regions to develop their own programs. The result is a patchwork of uneven approaches.

State programs operate with little federal oversight; no regulations exist that might provide better continuity among the states. With no established performance measures, there's no way to determine whether state programs are doing a good job.

Most efforts to launch state programs have been piecemeal and fragmented. For example, only now, 30 years after the program began, is Missouri finally developing written regulations.

Today, fewer than 9,000 ombudsmen, the vast majority of whom are poorly trained, unpaid volunteers, are responsible for helping to ensure the safety and care of the nation's 1.8 million nursing home residents. The federal government allocates about $13 million annually for the program.

Only 20 states meet a standard recommended by the Institutes of Medicine of one paid ombudsman for every 2,000 nursing home residents. Even those who meet the standard say it is a struggle to keep up with all of the demands.

Not enough time

Nancy Flowers, a paid staff member, operates the local ombudsman program in Evanston, Ill., which monitors 2,000 beds in the city's 13 nursing homes. Flowers recently walked into her office at 7:30 a.m. after a long weekend and found 73 voice and e-mail messages waiting.

"They're all asking for help, and I desperately need to return those," she said.

Flowers spent much of the morning with a phone pressed to her ear, a cup of coffee in close reach. On a nearby bookshelf sat a book titled "The 36-Hour Day."

By noon, Flowers was driving toward Chicago for a 1 p.m. court hearing on behalf of a resident. After court, she grabbed a sandwich before the hourlong drive back to Evanston. Back in the office, more messages had piled up, and she stayed on the phone until nearly 6 p.m., when she called it a day. The next morning she met with her boss to plead for hiring another staff person.

Volunteers: Tired of being muzzled

This year at a senior service center in Washington, Bush administration officials said the ombudsman program embodies the spirit of volunteerism that the president has highlighted in his national call to community service.

But according to many involved in the program, the volunteers are poorly trained, face overwhelming workloads and are often inaccessible on evenings and weekends.

In the St. Louis region, a paid staff of two and 40 volunteers are responsible for nearly 200 nursing homes. Statewide, about 20 percent of nursing homes are not visited by an ombudsman in any given year.

Many volunteers quit out of frustration.

Rose Hilger finished as a finalist for volunteer ombudsman of the year in Illinois just a few years ago but no longer works in the program. Hilger said she grew tired of being muzzled by her bosses from talking to lawmakers about needed changes, being told to curb her criticism of bad homes and at times being asked to turn a blind eye to poor care.

"They have no power, no enforcement, and people ignore them, basically," Hilger said. "I thought we were supposed to seek the truth, but basically they don't want that all the time."

Paid staff: At odds with the bosses

By federal law, the ombudsman is required to speak out against government laws, regulations, policies and actions when justified. But that often puts ombudsmen at odds with their bosses and their bosses' bosses. Only 13 of 50 state programs operate independently of state aging offices.

"It's not your typical state job," said Carol Scott, Missouri's state ombudsman, who also serves as president of the National Association of State Long-Term Care Ombudsman Programs. "We're asked to be an advocate, and yet most of us are placed in an atmosphere where you don't buck the tide of what the governor's agenda is."

Since 1998, 40 people have left their jobs as heads of state ombudsman programs, many over political differences with a government administration.

The turnover took place in 28 states.

In 1998, Robyn Grant quit as head of the ombudsman program in Indiana after being forbidden by her bosses in the state's Bureau of Aging to talk to lawmakers, speak at public hearings or even send copies of proposed legislation to local ombudsmen.

"Every move I made was scrutinized," she said. "I banged my head against the wall for eight years and got incredibly frustrated."

In Colorado, the state ombudsman resigned last year, citing state interference with access to the legislature and the media.
In Alaska, three state ombudsmen resigned within two years.

Going undercover in New Mexico

Despite the program's widespread shortcomings, a handful of success stories have emerged.

In Georgia, ombudsmen recognized that malnutrition was a problem. As a result, the ombudsman program evaluated feeding practices in all the state's homes and then worked with the industry to make improvements.

In Louisiana, the ombudsman program is noted for the extensive training volunteers get, including 26 hours of classroom work followed by an exam and an internship alongside a more experienced ombudsman.

In New Mexico, an escalating war of words with the nursing home industry prompted officials on aging there to send some ombudsmen undercover to pose as residents.

"Their (the nursing home staff's) ability to bathe and toilet me was inappropriate," said Michelle Grisham, director of the state agency on aging. "They left me completely naked with only a robe that was open and let me sit for three and a half hours watching a Ninja Turtle movie with the rest of the residents. I was the most popular girl in the facility."

Other investigations found even worse problems, including verbal and emotional abuse, thefts, residents left sitting for hours in urine and feces, and records being falsified.

"We witnessed a resident fall . . . and the nurse's aide was screaming, 'Get up, get up. I'll get into trouble,' " Grisham said. "She left the 90-year-old laying on the floor for several hours before taking him to the hospital."

One undercover ombudsman received a steady diet of Spam

When the industry complained about the visits, the governor backed Grisham.

Since then, Grisham got the authority to conduct the undercover visits written into the state law.

But even the undercover visits aren't enough to bring meaningful change, said Tim Covell, former New Mexico state ombudsman.

"My feeling is that bad care is endemic and marginal care is probably what they aspire to in the nursing home industry," Covell said. "I would not live in a nursing home, period. I would choose to die in my home. And that's on the basis of what I saw."

Robert Cohen of the Post-Dispatch assisted with the reporting of this story.