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, Eddie failed to improve. Because he no longer required hospital-level care, he became ineligible for Medicare hospital coverage. Since his spouse, James, was wheelchair-bound with crippling rheumatoid arthritis and unable to care for him, Eddie was transferred to a nursing home. Medicare did not cover the $245 per day cost. After 2 years, Medicaid began to pick up the nursing home bills. Much of the couple’s life savings—earned during the 50 years Eddie worked in a men’s clothing store—had been spent to allow Medicaid eligibility. Because Medicaid paid only $130 per day, few recreational activities were offered, and Eddie 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.
INTRODUCTION
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; e.g., eating, dressing, bathing, toileting, and getting in or out of bed or a chair) and in instrumental activities of daily living (IADLs; e.g., laundry, housework, meal preparation, grocery shopping, transportation, financial management, taking medications, and telephoning) (Table 12-1). Thirteen 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 (Kaiser Commission on Medicaid and the Uninsured, 2013).
| Activities of daily living (ADLs) (basic human functions) Feeding Dressing Bathing or showering Getting to and from the toilet and caring for incontinence Getting in and out of a bed or chair |
| Instrumental activities of daily living (IADLs) (activities necessary to remain independent) Doing housework and laundry Preparing meals Shopping for groceries Using transportation Managing finances Making and keeping appointments Taking medications Telephoning |
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 (U.S. Census Bureau, 2012). 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?
WHO PAYS FOR LONG-TERM CARE?
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 1,500 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 $235.6 billion on long-term care in 2013, including $155.8 billion on nursing home care (Hartman et al., 2015). In 2011, a 1-year nursing home stay cost an average of $90,000.
Direct out-of-pocket payments by patients and their families finance about 15% 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 40% of US long-term care expenditures. 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 barely assist them. Only 21% of long-term care costs are financed by Medicare (Kaiser Family Foundation, 2013).
Average out-of-pocket expenses for health care paid by Medicare beneficiaries amounted to 24% of family income in 2010. One-fifth of these expenses went to nursing homes (Kaiser Family Foundation, 2014).
What are the precise roles of Medicare, Medicaid, and private insurance in the financing of long-term care services?
Glenn Whitehorse developed diabetes-related 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.
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