By Ellen Hoffman On July 17, Sheila Albores of Illinois and Jeanne Hodgson of West Virginia trekked to Capitol Hill to tell horror stories to a Senate panel about trying to get minimal, proper care for their mothers in nursing homes. The tales were frighteningly similar. Both mothers went from hospitals to nursing homes, and the daughters and other family members visited and met repeatedly with staff to try to ensure that their parents received the prescribed care.
Among the lapses cited: making the patient wait hours for an oxygen hookup; medication given improperly or not at all; disregard for physical comfort, including the need for a bath; absence of therapy; and not informing family members of a patient's frequent injuries resulting from falls. Hodgson testified: "We complained, we tried to work with the staff, but it didn't change anything." Hodgson's mother, who suffered from Alzheimer's, was found hanged, a shower hose wrapped around her neck. Her death was considered suspicious, but Hodgson says a police investigation "went nowhere."
Albores' mother died in a hospital emergency room on the day she was to be released and put under the care of a home health agency. She didn't get "the treatment and services she was sent to the nursing home to receive...despite my vigilance, my constant calls, my visits to the home, my begging and pleading," Albores testified (see both women's congressional testimony).
"FATAL END." At the Senate hearing, the General Accounting Office testified that during the 18 months ended in January, 2002, 20% of all nursing homes monitored by the federal government -- 3,500 in all -- were cited for "deficiencies involving actual harm or immediate jeopardy to residents."
No statistic, however horrifying, says as much as Albores' closing comment: "My mother was 57 years old, able to voice her complaints and concerns, and had the support of family at her side at the nursing home, and yet still faced a fatal end."
Unfortunately, the testimony given on July 17 hints at one of the most serious retirement dilemmas facing aging baby boomers: how to ensure that you, your spouse, parent, or other loved one receives good nursing-home care. Indeed, according to the federal government, 40% of Americans 65 or older will be spend at least some time in a nursing home, making quality of care an issue one no one can ignore.
A first step would be to check data on nursing homes collected by government inspectors and summarized on Nursing Home Compare, a Web site maintained by the Health & Human Services Dept. The site, which is updated every 12 to 15 months, reports on deficiencies found in various homes.
TAKE A CLOSE LOOK. One big caveat: The GAO told the Senate panel that the data appear to be unreliable. "There's information suggesting that the surveyors are underreporting [deficiencies], and there are problems of whitewashing reports by [home] supervisors," says a Senate aide with expertise in the area of health care for the elderly.
Still, despite its limitations, the site can help you weed out homes in your area that have consistently been cited for poor care. And you can draw a geographical radius for your search, depending on how close you want the care center to be to your existing home. This is especially useful if you're searching on behalf of a parent who might be hundreds of miles away.
Janet Wells, director of public policy for the National Citizens Coalition for Nursing Home Reform in Washington, D.C., says once you've taken a preliminary look at Nursing Home Compare, you need to visit promising homes in person. What should you look for? Her tips include: "Interview residents who live in the home. Interview their family and friends about what they've observed. Check to see if call bells are being answered. Notice if a lot of people are in physical restraints [a sign that there may be inadequate staff to monitor them]. Check for odors [to see if the facility is kept clean]. And notice whether patients are calling out and nobody is paying attention to them."
WEB HELP. Experts say the factor that most determines the quality of care is staffing, but Wells cites a 2002 study by the HHS that found "fully half of nursing homes are badly understaffed." Unfortunately, Wells adds, the government's data on staffing is "notoriously inadequate." So it's essential to do your own homework. That means scheduling multiple visits to a home you're seriously considering, especially in the evening or on a weekend, when you're most likely to get a true picture of whether it has enough trained staff to meet patients' needs.
The Coalition for Nursing Home Reform's Web site provides "A Consumer Guide to Choosing a Nursing Home", plus fact sheets on topics such as how to evaluate physical restraints, residents' rights, and access and visitation to patients. To research complaints that have been filed against a particular nursing home, contact your state's long-term care ombudsman. The federal government requires every state to have one to receive complaints about nursing homes and other long-term care facilities, act as advocates for patients, and provide information to families of patients.
Most nursing homes receive funding from the federal government and, therefore, are required to meet minimum staffing quality standards. On that front, there's some good news. Because of new calculations in formulas for federal support, nursing homes will receive a $6.9 billion windfall over 10 years, beginning in fiscal 2004. Senator Charles Grassley (R-Iowa) is working with the federal Center for Medicare & Medicaid Services, plus the nursing home coalition and other interested groups, to require that all of the windfall money be earmarked for direct care of patients, especially for staffers who provide hands-on care. He's optimistic that a deal can be reached.
BIG DECISIONS. The other big issue is out-of-pocket costs. Here's an important consideration to keep in mind: No direct correlation exits between the cost of care and the quality, according to data from private insurers. That's all the more reason to shop around and make an informed choice.
The Metlife Mature Marketing Institute, an affiliate of Metlife Insurance (MET), found recently that the average daily cost of a private room in a nursing home has risen to $181, or $66,153 per year, an increase of 6% over 2002. The full study allows you to check on costs for private and semiprivate rooms and to find a home health-care aide in 87 different regions. One solution for affordable care is to buy long-term health-care insurance (see BW Online, 11/14/02, "Sharing Long-Term-Care Insurance").
The matter of seeking and securing full-time care -- whether for yourself or a loved one -- is one of the most traumatic issues you could face. It deserves the same sort of attention and research devoted to investing your money and deciding where to live. The sooner you address it, the better. In addition to writing Your Retirement for BusinessWeek Online, Hoffman is the author of The Retirement Catch-Up Guide and Bankroll Your Future Retirement with Help from Uncle Sam. You can contact her through her Web site, www.retirementcatchup.com