Long-term care is the perfect hot-button issue for those who like to rail against government incompetence. It encompasses several mortal sins of ineptitude and bureaucracy: insensitivity, ineffective enforcement and poor stewardship of taxpayer dollars.
But let's be honest. Government's approach to the issue is not unlike that of its constituents. Frailty and dementia make us uncomfortable. We are sympathetic for the afflicted and their caregivers but relieved that it is not our burden to bear. Just send us the bill.
Long-term care has few champions. David Stevenson, a Harvard Medical School professor, noted in a recent edition of the New England Journal of Medicine that health care was mentioned more than 1,000 times during the 35 Democratic and Republican debates during the primaries. But almost nothing has been said about LTC, despite the fact that it comprises about 10 percent of health care spending.
LTC is more about social functioning than managing disease. The estimated 9.5 million Americans who require LTC need assistance with at least one activity of daily living (bathing, dressing, eating, toilet use and moving from one room to another) or instrumental activities of daily living (meal preparation, money and medication management, telephone use, light housework and food shopping).
Most LTC services are provided by relatively low-paid trained staff rather than physicians or registered nurses. It's an intensely personal service, traditionally designed to keep people safe, clean and well-fed. The trend is toward maximizing patient self-sufficiency and independence.But as we and government avert our eyes, bad things are happening. Back to those government mortal sins.
Much of LTC is given for free by unpaid and untrained spouses and children. There are an estimated 16 million working-age adults caring for sick or disabled family members, according to the Commonwealth Fund Biennial Health Insurance survey. Of these, 9 million have their own health problems. Women comprise two-thirds of the caregivers. These caregivers disproportionately come from lower-income households and lack insurance, and 60 percent report problems with medical bills or medical debt.
The annual out-of-pocket cost for a family caregiver is $5,500, which is more than the average U.S. household spends on health care and entertainment combined. Providing such care is a heavy burden in physical, mental and emotional pain. Sixty-two percent of caregivers must alter work schedules, and the resulting lost productivity costs employers $29 billion annually. Between 30 percent and 59 percent report depressive disorders or symptoms. At least half suffer feelings of isolation and being overwhelmed by the burden.
For many, care giving at home is the only option. The national average price for a private room in a nursing home was more than $70,900 per year. The cost of four hours of home health aide services based on an average rate of $25 an hour is about $36,500 a year. The average annual rate for a private room in an assisted living center would be about $33,300.Medicaid accounts for about 41 percent of long-term care spending, compared to less than 25 percent by individuals and their families and private insurance at about 8 percent. Medicare funding, which is limited to 100 days of post-acute care, accounts for 22 percent. Nearly 80 percent of residents in nursing facilities rely on Medicaid or Medicare subsidies. Medicaid demands personal impoverishment before aid is extended. For those not yet qualifying for Medicaid, the financial burden of long-term care consumes lifetime savings quickly.
Government has largely been ineffective in imposing its will on quality sanctions. A 2005 Government Accounting Office study reached some good-news/bad-news conclusions.
The good news: The proportion of nursing homes with serious quality problems decreased from 29 percent in 1999 to 16 percent in 2005. The bad news: The decrease was, at least in part, due to: (1) an inconsistency in state-to-state surveys, and (2) consistent understatement of serious deficiencies by state surveyors. The GAO also found many poor-quality facilities that cycled in-and-out of compliance.A 2007 Centers for Medicare & Medicaid Services study concluded that enforcement of citations was having only a limited effect. Researchers said nursing-home behavior rarely changed without a formal citation, and that many responded with denials or indignation before making only perfunctory changes. They said the enforcement process unintentionally undermined itself when surveyors downgraded or eliminated deficiencies from preliminary reports.
Federal and state governments, which provide two-thirds of the LTC funding, require no accountability for how those taxpayer dollars are spent by vendors.
Most states have adopted a prospective payment system whereby payments are set in advance based on allowable costs. The system is designed to constrain costs rather than enhance quality. Because there is no formal accountability for how the reimbursement is spent, some facilities cut staff to bolster profits to the detriment of patient care. One suggested reform would be to establish and directly fund four cost centers: direct care services (nursing and therapy); indirect care (food and housekeeping); capital costs (land and buildings); and administration.
Private-equity firms have cashed in on the current situation. As of 2007, they had purchased six of the largest chains, representing 9 percent of U.S. nursing home beds.
In September 2007, The New York Times compared 1,200 nursing homes purchased since 2000 to 14,000 other nursing homes. The investigation showed a pattern of private investment groups acquiring homes, boosting profitability by cutting costs and then reselling the facilities at a significant gain. The typical private-equity home scored worse than the national average on 12 of 14 quality measures; had 35 percent less registered-nurse staffing; had 19 percent more serious health deficiencies; and was 41 percent more profitable.
Another study compared the results of 105 nursing homes purchased by one private-equity firm 18 months prior to purchase and 18 months afterward. Following the purchase, nursing staffing fell 7 percent to 85 percent of the national average, while total deficiencies doubled from 500 to 1,000.
The U.S. long-term care system often appears to operate contrary to the principles of marketing, sound management and human dignity. It is hard to imagine its public image could sink any lower.
According to a Kaiser Family Foundation survey, 84 percent of Americans have experience with nursing homes as a patient or visitor. Respondents believed nurses (84 percent), doctors (69 percent) and hospitals (64 percent) do a good job of serving patients. Nursing homes (35 percent) ranked slightly below pharmaceutical companies and slightly ahead of health insurance companies and HMOs.
Twice as many respondents said nursing homes made residents "worse off" (41 percent) than "better off" (19 percent). Of optimum long-term care choices, only 4 percent chose nursing home, well below assisted living (17 percent), at-home care (53 percent) and living with relatives (21 percent).
Perhaps most defining, 29 percent of a large-sample study of seriously ill people over 70 said they would rather die than enter a nursing home.Along with Social Security and Medicare, long-term care is the third leg on the retirement security stool. It desperately needs a champion.
Steve Jacob is publisher of the Star-Telegram/Arlington and Northeast Tarrant County and a master's student in health policy and management at the University of North Texas Health Science Center in Fort Worth. Readers may write to him via e-mail at sjacobstar-telegram.com.