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 2011, about 66 million people served as unpaid family caregivers, of whom the majority were women, many over age 60. 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. The majority of informal caregivers provide 30 hours per week of care, and the estimated economic value of their unpaid contributions was approximately $450 billion in 2009. In 2007, 37% reported quitting their job or reducing their work hours in order to assist their family members, and 40 to 70% suffer from depression (Family Caregiver Alliance, 2012). Elderly people with caregivers 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).
Community-Based and Home Health Services
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. 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 after 1980. 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.
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 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, does not provide 24-hour coverage for ADL support.
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 2012 was $42,600, most of which comes from out-of-pocket payments, thereby pricing assisting living out of the reach of low- and moderate-income families.
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 2012, 1.4 million people resided in US nursing homes. Sixty-eight percent of nursing home residents are women, who more often outlive their spouses (CMS, 2013). 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. Sixty-five percent of nursing home residents have moderate or severe cognitive impairment, 36% are incontinent, 60% have four or five ADL impairments, and 93% have restricted mobility (Kaye et al., 2010; CMS, 2013).
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. Quality problems persist; the average number of deficiencies per for-profit facility was 6.3 compared with 4.8 for nonprofit nursing homes (Kaiser Family Foundation, 2013). Commonly cited deficiencies are failure to prevent falls, failure to prevent or treat pressure ulcers, and use of restraints (Werner & 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 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, 69% of all nursing homes were under for-profit ownership, many operated by large corporate chains (CMS, 2013). 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.