Numerous local, state and federal agencies monitor nursing homes, but vigilant, assertive family members could be more important than any of those in assuring quality care.
Industry officials and consumer advocates say too many nursing home patients are placed in facilities that their families haven't fully evaluated. After residents are admitted, too few are visited by relatives or friends looking out for their interests.
And the fewer pairs of eyes observing care in any nursing home, the greater the chance that problems will go undetected. Nothing guarantees, however, that even daily visits by watchful relatives will protect patients, a joint Pittsburgh Post-Gazette/KDKA investigation has concluded.
The wife and daughter of Stanton Heights resident Eugene Neufeld said efforts to instruct staff about his needs at the ManorCare Monroeville nursing home led to their being ordered out of the facility under police escort in June.
In a lawsuit filed against ManorCare in Allegheny County Common Pleas Court this month, the Neufelds listed numerous complaints about the care provided to the Parkinson's disease patient with dementia. He had special needs related to feeding, changing, turning and throat suctioning, and the family was vocal for two weeks about what they claimed was the staff's failure to meet those needs.
The nursing home transferred Neufeld to UPMC Shadyside June 28, and he died five weeks later. The family alleged ManorCare kicked him out because it no longer wanted to deal with their complaints of poor care.
ManorCare corporate officials, in a written response sent to the newspaper, said they could not discuss specifics about the Neufelds, but added: "We deny any negligence in this case and feel our care for this resident was appropriate."
Nursing home leaders say good homes encourage family participation, but how each facility responds to concerns about care varies. Unresponsive staff and administrators should prompt a family to make inquiries elsewhere.
"There are an awful lot of ... agencies that do play an oversight role, and it is confusing to people. That's a good thing, though, because it means government is very concerned with the issue," said Christopher Abruzzo, chief deputy attorney general for Pennsylvania's Medicaid Fraud Control Section.
As a guide, people should contact the state Department of Health with concerns about general conditions or care in nursing homes; the ombudsman in their county aging department about problems with finances, property or other consumer concerns; and local police or their aging department's office of protective services with any concerns about abuse.
Government inspectors and law enforcement agencies can have a hard time verifying problems, sometimes because of complex medical factors or because a patient's dementia renders his or her version of events unreliable.
And in some cases, consumers have unreasonable expectations of what a nursing home can do, or the problems they believe they witnessed aren't evident when investigators show up.
Susan Getgen, director of the state health department's division of nursing-care facilities, said more problems occur from unintentional human error or unavoidable medical complications than from irresponsible conduct by nursing homes. Therefore, the state doesn't cite facilities for every instance of bed sores, dehydration, weight loss or other common problems.
The state, which inspects nursing homes every nine to 15 months, issues citations at four levels of severity: no harm, minimal harm, actual harm and immediate jeopardy. Penalties are typically imposed only for "immediate jeopardy" or repeated "actual harm" citations.
Before choosing any home, consumers should examine reports of the deficiencies found in state inspections. Yet many families ignore those and pick homes only according to location or recommendations by hospital social workers.
Several years' worth of information for each home is available on the Internet by clicking on "nursing home information" on the home page of the state's Web site, www.health.state.pa.us. Nursing homes also must make the paper versions of their inspection reports available on site to the public.
Many nursing home administrators are critical of the inspection process, contending it is too subjective and too many regulations are irrelevant to the quality of care. They stress the importance of personal visits by families to evaluate facilities, a task endorsed roundly by government officials and consumer advocates.
"People will say, 'I'm not an expert,' but you can tell" if conditions are acceptable, said Ron Barth, president of the Pennsylvania Association for Non-Profit Homes for the Aging.
"You can see whether residents are enjoying themselves or just sitting around staring at space. At mealtime, you can see whether they're enjoying the food or not," Barth said. "I think they should be concerned about more things than just the location."
Consumers should consider supplementing weekday guided tours with visits during weekends or evening shifts when staffing is lower. They should evaluate mealtimes and feel able to talk to residents and staff. There might be reason to be wary of any place that restricts such visits.
"I'd be wondering what they didn't want me to see," said Toni Allen, an ombudsman for the Allegheny County Area Agency on Aging.
New Jersey, Florida and some other states have gone to a simplified report card system to grade homes, a move endorsed by the Pennsylvania Health Care Association.
"It takes complex stuff and reduces it in a reasonable way that's understandable," said Alan Rosenbloom, president of the for-profit nursing home group, noting that inspection reports and the deficiency system can be hard to decipher.
Getgen said Pennsylvania officials consider the full details of the reports to be useful, and don't want to reduce them to something that could be "very nebulous."
"If you sit and read [the survey report], you can find out who, what, when, where and why," she said. "It's a lot of information, but putting someone in a nursing home is a very big decision also."
The state Web site also tells -- and every nursing home is required to post prominently -- whether the facility is on a provisional or regular license; however, the site doesn't make available any history of past provisional licenses or other penalties. Health department officials may add such a list but have no timetable for doing so.
The federal agency overseeing nursing homes, the Centers for Medicare & Medicaid Services, has its own take on assisting consumers. It has begun analyzing data the nursing homes have been required to report for years to determine how facilities compare in preventing weight loss and bed sores and other quality indicators.
The comparisons were published in newspaper advertisements earlier this year in six pilot states, and the information is updated regularly on a government Web site, www.medicare.gov. Detailed information about homes in Pennsylvania and the rest of the country is to be provided, starting in November.
"My view is that clearly we can improve quality, and the best way is to measure it and publicly disclose it," said Tom Scully, agency administrator. "Even if no consumer looks at it ... it raises the whole level of debate" and creates peer pressure among administrators to maintain or upgrade care.
The best advice to consumers: Take everything into account.
Plan ahead instead of awaiting a crisis. Use all of the tools available from computer research, personal visits and experiences of friends and neighbors.
And make sure the nursing home is close enough that frequent visits are possible, but don't automatically select the one that's most convenient.
Gary Rotstein can be reached at grotstein@post-gazette.com or 412-263-1255.
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