Eddie Taylor awoke one morning at his home in California unable to speak or to move the right side of his body, but able to understand other people around him. After 3 terrifying days in a hospital and 3 frustrating weeks in a stroke rehabilitation center, Mr. Taylor failed to improve. Because he no longer required hospital-level care, he became ineligible for Medicare hospital coverage. Since Mrs. Taylor was wheelchair-bound with crippling rheumatoid arthritis and unable to care for him, he was transferred to a nursing home. Medicare did not cover the $220 per day cost. After 2 years, Medicaid began to pick up the nursing home bills. Much of the family’s life savings—earned during the 50 years Mr. Taylor worked in a men’s clothing store—had been spent to allow Medicaid eligibility. Because Medicaid paid only $140 per day, few recreational activities were offered, and Mr. Taylor spent each day lying in bed next to a demented patient, who screamed for hours at a time. Unable to voice his complaints at the inhuman conditions of his life, he became severely depressed, stopped eating, and within 3 months was dead.
On high school graduation night, Lyle celebrated with a few drinks and drove to his girlfriend’s house. He lost control of the car, hit a tree, and suffered a fractured cervical spine, unable to move his arms or legs. After 9 months in a rehabilitation unit, Lyle remained quadriplegic. He returned home, with a home care agency providing total 24-hour-a-day care at a cost of $300 per day, not covered by insurance. Lyle’s father, a businessman, became increasingly angry at his wife, the principal flutist in the city’s professional orchestra, because she refused to leave the orchestra to care for Lyle. After 1 year and $110,000 in long-term care expenses, Lyle’s parents were close to divorce. One night Lyle’s father awoke in a cold sweat; in his dream, he had placed a plastic bag over Lyle’s head and suffocated him.
Time and again physicians and other caregivers witness the tragedy of chronic illness compounded by the failure of the nation’s health care system to meet the social needs created by the illness. The crisis of long-term care is twofold: Thousands of families each year lose their savings to pay for the chronic illness of a family member, and long-term care often takes place in dehumanizing institutions that rob their occupants of their last remaining vestiges of independence.
Long-term care includes those health, social, housing, transportation, and other supportive services needed by persons with physical, mental, or cognitive limitations sufficient to compromise independent living. The need for long-term care services is usually determined by evaluating a person’s impairment of activities of daily living (ADLs; eg, eating, dressing, bathing, toileting, and getting in or out of bed or a chair) and in instrumental activities of daily living (IADLs; eg, laundry, housework, meal preparation, grocery shopping, transportation, financial management, taking medications, and telephoning) (Table 12–1). Twelve million people in the United States require assistance with one or more ADLs or IADLs, and can therefore be considered as needing long-term care services (Kaye et al, 2010).
Table 12–1. Activities requiring assistance in long-term care
Projections of growth for the elderly population in the United States are startling. In 2000, the population 65 years of age and older numbered 35 million; this figure is expected to reach 72 million by the year 2030. The number of people 85 years and older will more than double from 4.2 million in 2000 to 8.7 million in 2030. Those 80 years and older are most likely to need long-term care because 56% have severe disability (Administration on Aging, 2010). As more and more people need long-term care, the answers to two questions become increasingly urgent: How shall the nation finance long-term care? Should most long-term care be delivered through institutions or in people’s homes and communities?
Phoebe McKinnon was in good health until she fell, broke her hip, and suffered a postoperative joint infection. She was placed on complete bed rest with oral antibiotics for 3 months, after which time she would have another surgery. Widowed, Ms. McKinnon lived alone; her only daughter lived 1500 miles away. Because Ms. McKinnon required 24-hour-a-day help, the social worker, after carefully researching the financial options, reluctantly suggested that Ms. McKinnon spend the 3 months in a nursing home. Ms. McKinnon and her daughter agreed but were shocked when the social worker explained that the cost would be $220 a day, for a total bill of $19,800.
The United States spent $205 billion on long-term care in 2009, including $137 billion on nursing home care (Martin et al, 2011). In 2006, a 1-year nursing home stay cost an average of $76,000.
In 2009, direct out-of-pocket payments by patients and their families financed 22% of long-term care services in the United States. A common scenario is that of Eddie Taylor: After a portion of their life savings are spent for long-term care, families finally become eligible for Medicaid long-term care coverage. Medicaid pays for 34% of US long-term care expenditures (Table 12–2). Many people expect the Medicare program to pay for nursing home stays, and like Phoebe McKinnon and her daughter, are surprised and shocked when they find that Medicare will not assist them. Only 28% of long-term care costs are financed by Medicare (Martin et al, 2011).
Table 12–2. Long-term care financing, 2009a
Average out-of-pocket expenses for health care paid by the Medicare beneficiaries amounted to 20% of family income in 2005. One-fifth of these expenses went to nursing homes (Kaiser Family Foundation, 2009).
What are the precise roles of Medicare, Medicaid, and private insurance in the financing of long-term care services?
Glenn Whitehorse, who was a diabetic, developed gangrene of his right leg requiring above-the-knee amputation. He was transferred from the acute care hospital to the hospital’s skilled nursing facility, where he received physical therapy services. Because he was generally frail, he was unable to move from bed to chair without assistance. Mr. Whitehorse’s physical and occupational therapists felt he might do better at home, where he could receive home physical therapy and nursing care. All these services were covered by Medicare.
Mrs. Whitehorse had Parkinson’s disease and was unable to assist her husband in bathing, getting out of bed, and going to the bathroom; she was forced to hire someone to assist with these custodial functions, which were not covered by Medicare. When Mr. Whitehorse no longer showed any potential for improvement, Medicare discontinued coverage of his home health services. The situation became too difficult, and he was placed in a nursing home for custodial care. Medicare did not cover the nursing home costs.
Which services provided in a nursing facility or at home are covered by Medicare? The key distinction is between “skilled care,” for which Medicare pays, and “custodial care,” which is usually not covered. A related issue is that of postacute versus chronic care. Medicare usually covers services needed for a few weeks or months after an acute hospitalization but often does not pay for care required by a stable chronic condition.
What are some examples of skilled care versus custodial services? Registered nurses in a hospital nursing facility, nursing home, or home care agency provide a wide variety of services, such as changing the dressing on a wound, taking blood pressures, listening to the heart and lungs to detect heart failure or pneumonia, reviewing patient compliance with medications, and providing patient education about diabetes, hypertension, heart failure, and other illnesses. Physical and occupational therapists work with stroke, hip fracture, and other patients to help them reach their maximum potential level of functioning. Speech therapists perform the difficult task of teaching stroke patients with speech deficits how to communicate. These are all skilled services, usually covered by Medicare.
Custodial services involve assistance with ADLs and IADLs rather than treatment or rehabilitative care related to a disease process; these are tasks such as cooking, cleaning house, shopping, or helping a patient to the toilet. These services, usually provided by nurses’ aides, home health aides, homemakers, or family members, are considered unskilled and are often not covered by Medicare.
Willie Robinson, who lived alone, suffered from deforming degenerative arthritis and was unable to do anything more active than sitting in a chair. Because Mr. Robinson had no skilled care medical needs, Medicare would not provide any assistance. Medicaid and the county welfare agency paid for a homemaker to provide 20 hours of help per week, but that was not sufficient. Mr. Robinson had no choice but to enter a nursing home, because that was the only way he could obtain 24-hour-a-day help paid for by Medicaid.
Medicaid differs from Medicare in paying the costs of nursing home care. For home health care, however, Medicaid generally does not cover 24-hour-a-day custodial services for people unable to care for themselves. The completeness of Medicaid’s nursing home coverage, in contrast to the limited nature of Medicaid-financed home health care, forces many low-income disabled people like Willie Robinson to go into nursing homes unless they have families capable of providing 24-hour-a-day custodial care. In order to qualify for Medicaid nursing home coverage, families may be forced to spend their savings down to low levels, although in some states, Medicaid allows spouses of nursing home residents to keep some of their assets.
Medicaid’s coverage of home health services has increased as a result of home- and community-based care 1915(c) waivers, initially authorized in 1981 (Ng et al, 2010). This program, which attempts to prevent nursing home admissions, allows Medicaid recipients to receive more home care services than previously. Whereas Oregon allocated 71% of its long-term care Medicaid dollars to this program in 2005, nationally Medicaid spent 35% of long-term care dollars for home and community-based care (Kaiser Family Foundation, 2006a).
Sue and Lew MacPherson, both age 72, were worried about their future. They remembered their cousin, who was turned down for private long-term care insurance because of his high blood pressure and later spent his entire savings on nursing home bills. Hoping to protect their $32,000 in savings, they decided to apply for long-term care insurance before an illness would make them uninsurable. Their insurance agent calculated the cost of two policies at $6000 per year, or 30% of their $20,000 per year income. At that price, Sue and Lew would spend most of their savings on insurance premiums within a few years. They declined the insurance.
Private insurance plays a minor role in long-term care financing, with only 8% of long-term care costs covered by private policies (Table 12–2). Experience rating (see Chapter 2) has had a profound effect on the dynamics of private long-term care insurance. The largest market for this type of insurance is the elderly population. Under experience-rated insurance, the elderly are charged high premiums because they are at considerable risk of requiring long-term care services. The 2009 median income of people over 65 is $31,000 (US Census Bureau, 2010). Only 17% of households with the head of the household aged 70 to 74 years could afford the average long-term care insurance policy (Kaiser Family Foundation, 2006b). The major attractive market for long-term care insurers is the younger employed population, but only a tiny fraction of this group is interested in long-term care insurance because the prospects of needing such care are so remote.
People purchasing long-term care insurance may find it to be a poor investment. Some private policies specify that a policyholder must be dependent in three or more ADLs before receiving benefits for home health services. Yet many people with fewer than three ADL impairments need long-term care services; for these people, their insurance may pay nothing.
Long-term care policies usually have a large deductible (measured in nursing home days) for nursing home care, and most policies pay a fixed daily fee rather than reimbursing actual charges. A typical policy might provide $150 per day after a 90-day deductible. The 2006 average daily nursing home charge was $220, meaning that $70 would be the patient’s responsibility. Thus a year’s stay would require out-of-pocket expenditures totaling 
over and above payment of the insurance premium. Most policies limit their coverage to a few years, which places a cap on how much the insurance will pay.
Since her husband died, Mrs. Dora Whitney has lived alone. At age 71, she became forgetful and one day left the gas stove on, causing a fire in the kitchen. Two months later, she was unable to find her way home after going to the store and was found by the police wandering in the streets. Her daughter, Kimberly, brought her to the university hospital, where she was diagnosed with Alzheimer’s dementia. After a team conference with her mother’s physicians, nurses, occupational therapist, and social worker, Kimberly admitted that her only option was to abandon her career as a teacher to care for her mother. Kimberly refused to place her mother in a nursing home, and funds were not available to hire the needed 24-hour-a-day help.
Most people needing long-term care services receive them from their family and friends. In 2007, about 52 million people served as unpaid family caregivers, of whom the majority were women. For men, their wives often provide long-term care, and for women, their daughters are frequently caregivers. A growing number of the elderly do not have family living near enough to them to provide informal care; the absence of an informal caregiver is a common reason for nursing home placement. On average, informal caregivers provide 20 hours per week of care, and the estimated economic value of their unpaid contributions was approximately $375 billion in 2007. Thirty-seven percent of informal caregivers to persons age 50 and older reported quitting their job or reducing their work hours in order to assist their family members. Elderly people with care-givers have shorter hospital stays, fewer readmissions, and lower inpatient expenses, demonstrating that unpaid caregivers create a great deal of value for the health care system (Levine, 1999; AARP, 2008).
Ana Dominguez insisted that her daughter Juana accept the Yale scholarship. Though at age 49 Ms. Dominguez was bed- and wheelchair-bound with multiple sclerosis, she would feel too guilty if Juana remained in San Antonio, TX, just to care for her. Before Juana left, she arranged with the home care agency to have her mother transported to an adult day health center 3 days a week; for nursing, physical, and occupational therapy 3 times a week; and for meals-on-wheels. Medicare paid for these services. But Ms. Dominguez needed someone at home 24 hours a day, a service not covered by Medicare. For $15 a day, Juana was able to hire Vilma, an undocumented teenager from El Salvador, to live at home. Adding Vilma’s pay and the cost of her food, Juana figured they would spend $35,000 of their $42,000 in savings by the time she graduated from Yale.
Community-based long-term care is delivered through a variety of programs, such as home care, adult day care, assisted living settings, home-delivered meals, board and care homes, hospice care for the terminally ill, mental health programs, and others. During the 1970s, the independent living movement among disabled people created a strong push away from institutional (hospital and nursing home) care toward community-based and home care that fostered the greatest possible independence. During the 1980s, AIDS activists furthered the development of hospice programs that provide intensive home care services for people with terminal cancer and AIDS. The home is usually a more therapeutic, comforting environment than the hospital or nursing home.
As a product of the intersection of the popular movement toward home care and the DRG-created incentive to reduce Medicare hospital stays, home health services expanded rapidly from 1980 to 1997. This, in turn, prompted changes in Medicare payment policies to rein in home care expenditures. After concerns were voiced about excessive cuts in Medicare home care payments, in 2000 Medicare instituted a prospective payment system for home care based on the episode-of-illness model (see Chapter 4). Home care agencies are paid a lump sum (which, like DRG hospital payments varies with the severity of the illness) for 60 days of care.
Many categories of health caregivers function in teams to perform home care, including nurses, physical, occupational, speech, and respiratory therapists, social workers, home health aides, case managers, and drivers delivering meals-on-wheels. Yet home care, designed to help fill the once low-tech niche in the health care system that assists the disabled with ADLs and IADLs, has become increasingly specialized. Home care agencies now offer intravenous antibiotic infusions, morphine pumps, indwelling central venous lines, and home renal dialysis, administered by highly skilled intravenous and wound care nurses, respiratory therapists, and other health care professionals. These developments are a major advance in shifting medical care from hospital to home, but they have not been matched by growth in the paid personal custodial care needed to allow disabled people to remain safely in their homes. Similarly, hospice care, while providing excellent nursing services for patients with terminal illnesses, is limited in the ADL support it provides. Hospice programs may not accept terminal patients without an informal caregiver at home; thus, the people who may need home hospice services the most cannot receive them.
Assisted living, which provides housing with a graded intensity of services depending on the functional capabilities of its residents, has been growing rapidly. However, the average annual cost in 2009 was $34,000, most of which comes from out-of-pocket payments, thereby pricing assisting living out of the reach of low- and moderate-income families (Stevenson and Grabowski, 2010).
Each morning, more than one and a quarter million Americans awaken in nursing homes. Most of them are very old and very feeble. Most will stay in the nursing home for a long time. For most, it will be the last place they ever live. … [Nursing home] residents live out the last of their days in an enclosed society without privacy, dignity, or pleasure, subsisting on minimally palatable diets, multiple sedatives, and large doses of television—eventually dying, one suspects at least partially of boredom. (Vladeck, 1980)
Often, informal help and formal home health services are unable to provide the care required for severely disabled people. Such people may be placed in nursing homes with 24-hour-a-day care provided by health aides and orderlies under the supervision of nurses. In 2007, 1.8 million people resided in US nursing homes. Sixty-seven percent of nursing home residents are women, who more often outlive their spouses (Kaye et al, 2010). Frequently, after caring for a sick husband at home, women will themselves fall ill and be placed in a nursing home because no one is left to care for them at home. People who reach the age of 65 have a 40% chance of entering a nursing home at some time in their life (www.medicare.gov/longtermcare/static/home.asp).
Seventy-six percent of nursing home residents have cognitive impairment and 93% have restricted mobility (Kaye et al, 2010). There are two main differences between the chronically ill inside and outside nursing homes: Nursing home residents have no family able to care for them, and a far larger proportion of nursing home patients suffer from dementia, a condition whose care is extremely difficult to provide at home by family members.
Nursing homes vary widely in quality. The Omnibus Budget Reconciliation Act of 1987 set standards for nursing home quality and mandated surveys to enforce these standards. Serious quality problems persist; the average number of deficiencies per facility increased from 5.7 in 1999 to 7.1 in 2005. Only 9% of nursing homes had no deficiencies in 2005. The most frequently cited deficiencies in 2005 were inadequate food sanitation, quality of care, professional standards, accident prevention, housekeeping, comprehensive care plans, infection control, pressure sores, and dignity (Harrington et al, 2006; Werner and Konetzka, 2010). Compared with non-Hispanic whites, Hispanics requiring nursing home are more likely to be placed in low-quality facilities (Fennell et al, 2010).
Lower-income people are housed in close quarters with several other patients and become totally dependent on an underpaid, inadequately trained staff. Hour after hour may be spent lying in bed or sitting in a chair in front of a TV. While quality of life varies between one nursing home and another, placement in a nursing home almost always thwarts the human yearning for some degree of independence of action and for companionship. A sense of futility overwhelms many nursing home residents, and the desire to live often wanes (Vladeck, 1980).
To keep down costs, most care in nursing homes is provided by nurse’s aides, who are paid very little, receive minimal training, are inadequately supervised, and are required to care for more residents than they can properly serve. The job of the nursing home aide is very difficult, involving bathing, feeding, walking residents, cleaning them when they are incontinent, lifting them, and hearing their complaints. In 2005, 66% of all nursing homes were under for-profit ownership, many operated by large corporate chains (Harrington et al, 2006). For-profit ownership has been associated with lower staffing levels and poorer quality of care compared with nonprofit ownership (Comondore, 2009).
Offering a humane existence to severely disabled people housed together in close quarters is a nearly impossible task. One view of nursing home reform holds that only the abolition of most nursing homes and the development of adequately financed home and community-based care can solve the nursing home problem.
Boomer was mad. As a self-employed person, his family’s health insurance coverage was costing $600 each month, in addition to his out-of-pocket dental bills. To make matters worse, a big chunk of his social security payments went to Medicare each year, not to mention federal and state income taxes and sales taxes going to finance Medicare and Medicaid, so that other people could get health care. While spending all this money, Boomer was healthy and had not seen a physician for 6 years.
One day Boomer’s father, Abraham, suffered a devastating stroke. After weeks in the hospital, largely paid for by Medicare, Abraham was transferred to a nursing home. Because Medicare does not cover most long-term care, Boomer’s mother paid the bills out of her savings until most of the money ran out. Abraham then became eligible for Medicaid, which took care of the nursing home bills. After Abraham’s illness, Boomer stopped complaining about his social security and tax payments going to medical care. Even though Boomer was paying more than he was receiving, Abraham was receiving far more than he was paying. Boomer was grateful for the care his father received and figured that he might be in Abraham’s shoes some day.
In the early 1960s, it was recognized that private insurance was unable to solve the problem of health care financing for people older than 65. The costs of health care for the elderly were too great, making experience-rated health insurance premiums unaffordable for most elderly people. Accordingly, Medicare, a social insurance program, was passed (see Chapter 2). An identical problem confronts long-term care financing: As shown earlier in this chapter, most people who might wish to purchase long-term care insurance are unable to afford an adequate policy. Table 12–3 lists some proposals for improving long-term care.
Table 12–3. Proposals for improving long-term care
The Pepper Commission (1990) recommended that the nation institute a social insurance program to finance long-term care. This program, like Medicare Part A, could be financed by an increase in the rate of social security contributions by employers and employees. It would pay for caregivers to provide those services not currently covered by Medicare, especially in-home help in feeding, dressing, bathing, toileting, housework, grocery shopping, transportation, and other assistance with ADLs and IADLs. A similar proposal was offered by Physicians for a National Health Program (Harrington et al, 1991).
Mei Soon Wang was desperate to go home. Since a brain tumor had paralyzed her left side and left her incontinent, she had been confined to a nursing home because she had no family in San Francisco to care for her. Her daughter, visiting from Portland, heard of On Lok Senior Health Services, which cared for the frail elderly in their homes. On Lok accepted Ms. Wang, placed her in adult day care, arranged for meals to be delivered to her home, and paid for part-time help on evenings and weekends.
Because a reasonable quality of life and personal independence, within the confines of a patient’s illness, are so difficult to achieve in the nursing home environment, long-term care reformers often advocate that most long-term care be provided at home. The first step toward deinstitutionalizing long-term care is a financing mechanism that pays for more comprehensive community-based and home long-term care services.
The ideal long-term caregivers are the patient’s family and friends; thus, it can be argued that long-term care reform should support, assist, and pay informal caregivers, not replace them. Teams of nurses, physical and occupational therapists, physicians (who often know the least about long-term care), social workers, and attendants can train and work with informal caregivers, and personnel can be available to provide respite care so informal caregivers can have some relief from the 24-hours-a-day, 7-days-a-week burden. If informal caregivers are not available, all possible efforts can still be made to deliver long-term care in people’s homes rather than in nursing homes (Harrington et al, 1991).
An innovative long-term care program that has achieved great success is the On Lok program in San Francisco. Translated from Chinese, On Lok means peaceful, happy abode. Begun in 1971 in San Francis-co’s Chinatown, On Lok merges adult day services, in-home care, home-delivered meals, housing assistance, comprehensive medical care, respite care for caregivers, hospital care, and skilled nursing care into one program. Persons eligible for On Lok have chronic illness sufficiently severe to qualify them for nursing home placement, but only 15% ever spend time in a nursing home. Services for each participant are organized by a multidisciplinary team, including physicians, nurses, social workers, rehabilitation and recreation therapists, and nutritionists.
In 1983, On Lok became the first organization in the United States to assume full financial risk for the care of a frail elderly population, receiving monthly capitation payments from Medicare and Medicaid to cover all services. Whereas 45% of US personal health care expenditures go to hospital and nursing home services, On Lok spent a mere 17% on these items, making 83% of the health care dollar available for ambulatory home- and community-based services. While its services are far more comprehensive, On Lok’s costs are no higher than those for a similar frail elderly population under traditional Medicare and Medicaid (Eng et al, 1997; Bodenheimer, 1999). Seventy-five On Lok “look alikes” now exist in 29 states under the Program of All-Inclusive Care for the Elderly (PACE). However, PACE sites care for fewer than 25,000 of the 3 million frail elderly and disabled people in the United States.
The United States has not implemented a social insurance program for long-term care. However, other nations have been more proactive in addressing the needs of their aging populations. In 1995, Germany enacted a system of near-universal social insurance for long-term care—a program that the public has accepted as both affordable and beneficial (Harrington et al, 2002). A major expansion of the PACE concept combined with comprehensive social insurance for long-term care could provide a badly needed solution to the problems of long-term care in the United States.
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