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Advocating for Quality of Care and Quality of Life for Residents of Long-Term Care Facilities

INTRODUCTION

Long-term care (LTC) ombudsmen1 advocate to protect the health, safety, welfare, and rights of the institutionalized elderly in nursing facilities and board and care (B&C) homes. Given the dramatic changes that are occurring in the entire LTC sector, the need for such advocates is compelling. A multiplicity of factors—sociodemographic, economic, political, and clinical—are converging in ways that call for significant attention to the quality of care and quality of life needs of all persons who require LTC services. This report from the Institute of Medicine (IOM) addresses important aspects of these issues—specifically the LTC ombudsmen’s ability to deal with problems concerning care provided to and quality of life achieved by elderly residents of LTC facilities.

Improving the quality of life for residents of LTC facilities requires a basic understanding of the overall LTC system in the United States. This system is dynamic. Policymakers and providers are developing new approaches to delivering LTC services in residential settings. For example, increasingly, a broad range of housing alternatives provide some level of supportive services to older residents. As managed care organizations attempt to reduce hospital utilization and move patients into either the ambulatory or LTC arena, many LTC institutions will provide more acute or intensive health care services.

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The term “ombudsman” carries no meaning with respect to the gender of the occupant of the position. Indeed, in the United States, the vast majority of long-term care ombudsmen are women.



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act 1 Advocating for Quality of Care and Quality of Life for Residents of Long-Term Care Facilities INTRODUCTION Long-term care (LTC) ombudsmen1 advocate to protect the health, safety, welfare, and rights of the institutionalized elderly in nursing facilities and board and care (B&C) homes. Given the dramatic changes that are occurring in the entire LTC sector, the need for such advocates is compelling. A multiplicity of factors—sociodemographic, economic, political, and clinical—are converging in ways that call for significant attention to the quality of care and quality of life needs of all persons who require LTC services. This report from the Institute of Medicine (IOM) addresses important aspects of these issues—specifically the LTC ombudsmen’s ability to deal with problems concerning care provided to and quality of life achieved by elderly residents of LTC facilities. Improving the quality of life for residents of LTC facilities requires a basic understanding of the overall LTC system in the United States. This system is dynamic. Policymakers and providers are developing new approaches to delivering LTC services in residential settings. For example, increasingly, a broad range of housing alternatives provide some level of supportive services to older residents. As managed care organizations attempt to reduce hospital utilization and move patients into either the ambulatory or LTC arena, many LTC institutions will provide more acute or intensive health care services. 1   The term “ombudsman” carries no meaning with respect to the gender of the occupant of the position. Indeed, in the United States, the vast majority of long-term care ombudsmen are women.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Moreover, it is likely that LTC will continue to evolve as demographic and other changes interact with the health care and LTC reform processes. The following overview briefly reviews the issues of aging, disability, and financing for LTC services. This chapter answers the following questions: What exactly are LTC services? Who uses LTC services? Who pays for them? Finally, issues relating to the quality of LTC services are discussed. WHAT IS LONG TERM CARE? “LTC services” is a broad term used to describe a constellation of services used by people with disabilities. Such services may include health care, housing, transportation, and other social and supportive services. In a 1991 report, the IOM defined disability as “the expression of a physical or mental limitation in a social context—the gap between a person’s capabilities and the demands of the environment”; thus, disabilities may include physical, mental, and cognitive impairments (IOM, 1991a).2 Disability is often measured in terms of “activities of daily living” (ADLs); these include tasks such as eating, getting in or out of a bed or chair, toileting, bathing, and dressing (Katz et al., 1963). A broader view includes “instrumental” ADLs (IADLs); these are activities required for independence, such as preparing meals, grocery shopping, arranging for transportation, managing personal finances, taking medications, telephoning, and housekeeping. Thus, LTC can involve an immense array of services to assist individuals of all ages, and with a wide range of impairments, in achieving a meaningful life according to their own expectations and yardsticks. This is indeed a considerable challenge. The fact that the current health care system emphasizes acute medical care complicates this picture. Practitioners and systems of care experience great difficulty adapting to the long-term trajectory of chronic health and disability problems (Corbin and Strauss, 1988). The trajectory itself can be quite unpredictable (Verbrugge and Balaban, 1989). Reimbursement mechanisms such as Medicare, aimed specifically at the elderly and disabled, provide financing for medically oriented care related to acute health problems. To date, federal policy response to growing LTC needs has been limited, and private LTC insurance has not provided coverage for the great majority of Americans (Ball and Bethell, 1989; Estes et al., 1993). Thus, most people in this country are not able to avail themselves fully of the complex set of services typically considered to be LTC. This problem might not attract significant attention from the public or from policymakers were it not for the 2   The Disability in America report focuses chiefly on the prevention of disability (and the consequent gain in quality of life) among the nonelderly.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act fact that the population of individuals who need LTC services is large and growing. The associated costs of these services are great, and they are increasing as well. Thus, both U.S. policymakers and families are having to consider issues of LTC policy, as well as questions related to the utilization of chronic care services and expenditures for these services (Estes et al., 1993). WHO USES LONG TERM CARE? Typically, LTC is associated with the elderly, although many older persons never require such care. The percentage of people over 65 years of age is growing rapidly in the United States. In 1990, they represented 13 percent of the total population, but by 2020 they will account for 18 percent. The proportion of those over the age of 85 (the “oldest old”) is growing most rapidly of all. The number of people over age 85 is expected to grow from 3 million in 1990 to 8.1 million in 2030 and to continue to rise to over 15 million by 2050 (U.S. Senate, Special Committee on Aging, 1991). In 1991, although only 2.7 percent (766,000) of elders between the ages of 65 and 84 lived in nursing facilities, nearly 18 percent (552,000) of elders 85 and older lived in nursing facilities. Less than 1 percent (216,020) of the elderly (65 and older) resided in B&C homes (Sirrocco, 1994). In the same year, it was estimated that 17 percent (5.3 million) of elders 65 and older living in their communities needed some assistance with an IADL or an ADL. Just over one million persons in this group needed assistance with three or more ADLs (AARP, 1994b). Elderly residents of LTC facilities (nursing facilities, B&C homes, and other group residential homes) are the designated constituency of the ombudsman. An effective ombudsman strategy must be tailored to the characteristics of the group on whose behalf the ombudsman advocates. Nursing Facility Residents Nursing facility residents typically are female, white, and very old (in their eighties). These residents tend to suffer from multiple chronic diseases and functional impairments (AHCA, 1994). More than half enter the nursing facility from an acute-care hospital (Lewis et al., 1985). Under such circumstances, illness, time pressures, and constraints on available nursing facility beds means that they or their agents may not have the opportunity to select a nursing facility carefully. Too often, nursing facility residents have not chosen to enter a particular nursing facility or any facility at all (Coulton et al., 1989; Reinardy, 1992; Thuras and Kane, in press).

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act In addition to their need for LTC services, some characteristics of nursing facility residents render them vulnerable to abuse, exploitation, or neglect (Kane and Caplan, 1990). Substantial proportions of nursing facility residents suffer some degree of cognitive impairment from conditions such as Alzheimer’s disease or other dementias. Many nursing facility residents suffer sensory impairments, which interfere with their vision, hearing, speech, and ability to communicate. Some are bed- or chair-bound because of severe or deteriorating diseases that affect mobility. Many nursing facility residents have interested and involved friends and family members. However, elderly people who never married, who have no children, or who have no surviving children are overrepresented in nursing facilities. Nursing facility residents are often poor, and this makes them especially vulnerable. The approximately 50 percent of residents who receive some payment from Medicaid have exhausted their assets, and, although the amount varies from state to state, they are generally allowed to keep only about $40 a month for personal needs (such as clothing, cigarettes, and phone calls). Others have lost effective control of their financial affairs. Typically, nursing facilities identify a representative payee other than the resident to pay bills. Because of this some residents are also at risk of financial exploitation. Despite the common profile described above, nursing facility residents also differ markedly from each other in many ways. They differ in their interests, preferences, talents, education, life experiences, cultural backgrounds, and languages. Other differences among residents include: the reason for admission to the nursing facility, the anticipated length of stay, and expected prognosis. Although the average length of stay in a nursing facility is about a year, half of all people admitted to a nursing facility stay three months or less, and of these, half again die in the facility or after a short hospitalization. In contrast, some people stay for a long time. Kemper and Murtaugh (1991) found that people surviving to age 65 had a 42 percent probability of an admission to a nursing facility, an 11 percent probability of staying in a nursing facility for more than a year, and a 5 percent probability of staying in a nursing facility for five years or more. Within the short-stay group of nursing facility residents, some people receive short-term rehabilitation for conditions such as hip fracture and stroke, and some people receive terminal care or hospice services. These residents are less likely than those who stay for longer periods to suffer cognitive impairments, and their stay is more likely to be funded by Medicare. Within the long-stay group, some people are cognitively intact but functionally very impaired (perhaps because of conditions such as multiple sclerosis, pulmonary disease, or advanced arthritis), and some people are cognitively impaired but may well be ambulatory and capable and desirous of considerable activity. Some nursing facilities also house residents who are comatose, in vegetative states, as well as people on life support systems such as ventilators. Each of

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act these populations—rehabilitation clients, hospice clients, people in comas, long-stay residents with only physical illnesses, and long-stay residents with cognitive impairments—and their concerned agents and relatives are likely to need advocates, but the characteristic problems presented may differ dramatically, as may the strategies of the advocates. Although the average age of a nursing facility resident is in the mid-eighties, younger people also live in nursing facilities. Many are chronically mentally ill or developmentally disabled. Some of these younger, long-stay residents suffer from spinal cord injuries or deteriorating neurological diseases. In many areas of the country, persons with acquired immunodeficiency syndrome (AIDS) may live in nursing facilities when their disease reaches the advanced stage. Characteristic needs for advocacy may apply to some of these vulnerable populations. In addition, people under 60 (especially those who are disabled but not sick) are known to have particular problems achieving a satisfactory lifestyle in nursing facilities. Residents of Board and Care Homes and Other Residential Settings Between 600,000 and one million elderly and disabled persons are estimated to reside in B&C homes, also known as domiciliary care homes, personal care homes, residential care facilities, homes for the aging, rest homes, adult congregate living facilities, assisted living facilities, and adult foster care homes. These facilities provide residents with food, shelter, and 24-hour supervision or protective oversight. Usually they provide some form of supportive service or assistance as well. Such facilities vary significantly in size (from 2 beds to more than 1,000), monthly charge (from $383 to more than $4,000), and range and intensity of services provided (from no services to daily nursing care). Some facilities are targeted or marketed to younger persons with chronic mental illness or developmental disabilities, others are targeted to the elderly, and yet others serve a mixed-age population. The quality of care and life provided by these facilities to residents also varies (Dittmar and Smith, 1983; Reisacher, 1985; Mor et al., 1986; Eckert et al., 1987; U.S. House of Representatives, 1989; Hawes et al., 1993). Further, the payment systems and regulatory structures that apply to these facilities also vary enormously. Within a single state, multiple classes of facilities can exist, each with its own target population and its own set of rates and regulations concerning staffing, admissions, and standards of care. In at least 10 states, multiple agencies are responsible for licensing various types of B&C homes that serve a primarily elderly or mixed-age population of residents; in many states, entirely separate classes of homes are licensed by

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act departments of mental health or developmental disabilities (Hawes et al., 1993). In 1990 more than 32,000 licensed B&C homes across the country provided services to “a primarily elderly/mixed population of residents,” which includes older persons, persons with chronic mental illness, and persons with mental retardation or developmental disabilities (Hawes et al., 1993). This estimate excludes homes that are licensed by departments of mental health for special populations (e.g., homes serving only persons with chronic mental illness or group homes for persons with developmental disabilities), as well as homes specifically licensed for other special populations, such as children and persons receiving substance abuse treatment. Adding these other categories of homes probably brings the total number of B&C homes in the nation to more than 36,000 facilities (DHHS, 1982; Clark et al., 1994). In addition, an unknown number of unlicensed B&C homes are in operation. Such homes include both illegally unlicensed homes that avoid licensure altogether and legally unlicensed homes that fall outside the licensing requirements of particular states. Estimates place the number of unlicensed B&C homes as high as 28,000 (U.S. House of Representatives, 1989). Not all B&C homes are small and homelike. A recent study of 10 states found that, while 67 percent of licensed homes are small (2–10 beds), fully two-thirds of all beds are found in medium to large-sized homes (>10 beds). Indeed, one-third of all beds are found in homes with more than 50 beds. Much the same holds true for unlicensed homes, if one includes in this group other retirement communities and congregate settings (including apartments) that provide the same type of services as licensed B&C homes.3 In these unlicensed facilities, more than half the residents live in facilities with more than 50 beds (Hawes et al., 1994). Compared with nursing facility residents, B&C residents are more likely to be younger and more functionally independent. However, studies have found significant levels of disability among residents, and both anecdotal reports and more recent studies suggest a population that is aging and that experiences significant levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness (Hawes et al., 1994). Preliminary results from a 1993 study by the Research Triangle Institute and the Assistant Secretary for Planning and Evaluation (RTI/ASPE) indicate that, in the 10 study states, 30 percent of B&C residents were over 84 and another 30 percent were between the ages of 75 and 84 (Hawes et al., 1994). Only 20 percent of the residents in the RTI/ASPE study were under 65 years of age (Hawes et al., 1994). These results suggest that residents entering 3   Many retirement communities and other congregate living facilities are accredited through private accrediting agencies but not licensed per se by the state.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act B&C homes are older and that much of the B&C population is aging in place. For example, many residents placed in B&C homes as a result of the deinstitutionalization movement of the late 1960s and 1970s are now passing into old age and are increasingly in need of traditional elderly supportive services in addition to mental health services (Seltzer and Kraus, 1987). Similarly, the level of chronic disease and dependency in ADLs is lower among B&C residents than among nursing facility residents, but the types and levels of impairment are noteworthy. One-third of residents reported some form of degenerative joint disease, one-quarter reported circulatory and heart disorders, one-quarter reported hypertension, and one-seventh reported respiratory disorders (Dittmar and Smith, 1983). Estimates of impairments in mobility sufficient to limit physical activity outside the facility range from 31 to 44 percent. Approximately half of all elderly B&C residents needed help with at least one ADL (Dittmar and Smith, 1983; Mor et al., 1986). Recent data imply that the level of impairment for residents in B&C homes may have increased over the past decade. Studies in the early 1980s found less than 10 percent of residents were incontinent of bladder, whereas a 1993 study found over 20 percent were incontinent of bladder (Hawes et al., 1994). Dittmar and Smith (1983) found only 3 percent of residents using wheelchairs and only 2 percent bed- or chair-bound in 1983, but again, 10 years later Hawes and colleagues (1994) found that 15 percent of residents were using wheelchairs and 7 percent were bed- or chair-bound. These studies also suggest a level of cognitive impairment that, while lower than that found in nursing facilities, is still significant. Estimates of mild “confusion” to mild cognitive impairment ranged from 30 to 39 percent (Dittmar and Smith, 1983; Reisacher, 1985; Mor et al., 1986). Nelson (1987) found that 20 percent of the residents in B&C homes were severely impaired, 73 percent experienced some level of mental impairment, and 28 percent were identified by the physicians as having dementia. Hawes and colleagues (1994) found just over one-third of the residents presented with moderate to severe cognitive impairment. Residents of B&C homes also exhibit a high level of chronic mental illness. Even among homes serving a primarily elderly population, studies consistently find that between 10 and 15 percent of residents in these homes are mentally retarded or experience developmental disabilities and approximately 33 percent are diagnosed as having a chronic mental illness (Dittmar and Smith, 1983; Mor et al., 1986; Hawes et al., 1994).

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act LONG-TERM CARE EXPENDITURES AND SOURCES OF FUNDS: WHO PAYS? Any discussion of expenditures for LTC services (specifically, the issue of who pays) must begin with the fact that the majority of this care is provided by informal providers—family, friends, church members, voluntary groups, and others. It is difficult to assess the magnitude or the “costs” of this informal care, precisely because it is typically not provided on a fee basis and is uncounted. However, most experts agree it is substantial. Some authorities estimate that 70 percent of disabled elders rely exclusively on help from spouses, children, or other informal sources (Liu et al., 1985). The burden and indirect cost of this informal care falls heavily on women: 75 percent of informal caregivers are women, and many of them are elderly themselves (Pepper Commission, 1990; England et al., 1991). Caregivers, employers, and society all experience costs associated with informal caregiving, from foregone income to lost productivity to tax revenues not collected. Nursing facility care consumes the bulk of current spending and projected spending on LTC, despite the preference of most elderly to remain in their own homes. Of the roughly $60 billion spent on nursing facility care in 1991, Medicaid paid more than $28 billion, nursing facility residents and their families paid nearly $26 billion, Medicare paid nearly $3 billion, and other private sources (including private insurance) and government programs paid more than $2 billion. In contrast, only about $10 billion was spent on home care in 1991. Medicare paid $4.4 billion; Medicaid paid $1.4 billion; state and local governments contributed $1.3 billion; and funds from private health insurance and other private sources, including money paid directly by LTC consumers and their families, totaled $2.6 billion. Other federal programs, such as those funded through the Older Americans Act (OAA) and the Social Services Block Grant program, contributed about $1.2 billion (FY 1993) and $588 million (FY 1991), respectively, for services to older people (AARP, 1994b). The exact costs associated with B&C are almost impossible to estimate, although it can be assumed to be less than either nursing facility or home- and community-based care since there are fewer residents living in these types of facilities. Often the cost of care in these facilities is paid directly by consumers and their families as part of their rent, rather than by third-party payers such as Medicare. A study by the U.S. House of Representatives, Select Committee on Aging (1989) estimated that about half of elderly B&C residents pay for their care solely with private resources. It is known that a number of B&C residents receive Supplemental Security Income (SSI), a federal/state income supplement for poor elderly and disabled individuals. Some states provide SSI supplements for services in B&C homes (Hawes et al., 1993). Accordingly, some B&C homes are quite expensive and cater to

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act a fairly affluent clientele; others adjust their rates to the relatively low SSI reimbursement levels. Implications for ombudsman work are many. Because in almost all states the Medicaid reimbursement rate is lower than the private-pay rate, ombudsmen have become involved in Medicaid discrimination issues, where nursing facility residents or their families believe that a resident receiving Medicaid has been transferred inappropriately in the facility, discharged to a hospital and not taken back, or generally treated worse than private-pay residents. Ombudsmen have also advocated for systemic reform on the amount of money residents are allowed to retain for personal needs. Finally, because of concerns among many sectors of society, including policymakers, providers, and some of the general public, to contain costs, particularly through Medicaid reimbursement rates, ombudsmen operate in an atmosphere of resource scarcity. This scarcity tempers individual advocacy for the kind of service and lifestyle that might be most desirable for the consumer, and at the same time it underscores the need for systemic advocacy. Society faces the triple challenges of assuring that LTC services are delivered as efficiently as possible, designing new services that will meet the preferences of elders and their families, and assuring the quality of these services. QUALITY OF CARE AND QUALITY OF LIFE “Quality of care” and the broader concept “quality of life” are sometimes contrasted in health care discussions. Some argue that, if people are forced to relocate their residence in order to receive health-related services in a cost-effective manner, then the providers of those services are bound to hold themselves accountable for quality of life as well as quality of care. In fact, the Nursing Home Reform Law of 1987 requires nursing facilities to do just that. Quality of Care In comparison to hospitals, nursing facilities and, particularly, B&C homes are low-technology environments. Nevertheless, these settings (including subacute care units in nursing facilities) provide medical and nursing care that must still meet a standard of technical adequacy. If various medical and nursing protocols (e.g., for administration of medications, management of catheters, monitoring of specific diagnostic conditions, skin care of bed-bound people) are ignored, outcomes for residents will suffer. As early as the 1970s, federal demonstration projects in nursing facility quality assurance (Kane et al., 1979) established protocols for adequate care

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act of common problems and conditions seen in nursing facilities. Since that time, the typical nursing facility resident has become more frail, and many nursing facilities are undertaking more difficult procedures and caring for sicker people. The resident is indeed also a “patient” if he or she has just been discharged from a hospital after a stroke or a heart attack and still needs skilled treatment and monitoring. Prospective hospital payment, instituted in the mid-1980s, has led to quicker and sicker hospital discharges and more physically vulnerable residents. Ombudsman advocacy programs may have to become increasingly sophisticated about medical and nursing procedures. Ombudsmen may need access to experts in health care, including geriatricians, to assess complaints and determine investigatory courses to take and remedies to suggest individually and systemically. Structural, process, or outcome criteria can be used as measures of quality of care (Donabedian, 1966). Structural criteria are those that pertain to an entire organization. For example, structural criteria such as the training and supervision of staff, the record system, the procedures for infection control, and the quality of the physical plant and equipment may all reasonably be thought to affect the processes of care and, hence, subsequent health and functional outcomes. While the current emphasis is in resident outcomes and evaluation of the actual care provided, historically, nursing facility regulations relied heavily on such criteria; B&C regulations have remained at a far less developed state. Process criteria pertain to the appropriate and correct performance of specific procedures. One can ask about a wide range of procedures: Were they necessary? Were they performed correctly? One can ask certain questions about specific procedures as well. For example, regarding antibiotic medications, one can ask: Do all those receiving antibiotics need them? Do some people who do not receive antibiotics need them? Were the antibiotics given correctly (the right drug, the right dose, the right conditions, the right monitoring for side-effects)? Outcome measures are typically considered to be the end results of health care in terms of biologic, psychologic, and functioning variables. They may include various health indicators such as death rates, rates of illness, rates of specific complications of illness, functional abilities, and pain or discomfort. The often ambiguous role of the physician, who may be a consultant or outside practitioner and whose performance cannot readily be controlled by the facility, complicates the maintenance of quality of care in residential settings. Other professional personnel (e.g., psychologists, physical therapists, and speech therapists) may also be outside contractors, especially in small facilities. Patterns for delivering primary health care in B&C homes and other residential facilities are even less well supervised, and critics fear that inadequate attention is paid to residents’ existing health problems and new ones that may arise (U.S. House of Representatives, 1989). For example, the presence of or

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act need for physicians and other health professionals who understand geriatrics in nursing facilities and B&C homes may be a factor in appraising the patterns of complaints and issues of quality of care in LTC facilities. Quality of Life Quality of life is an expansive topic that encompasses broad notions of human existence. Highly personal views about one’s environment and living situation, as well as profound philosophical, religious, and spiritual beliefs and attitudes about life and death inform each person’s position on the subject (Lohr, 1992). Anthropological and ethnographic studies in nursing facilities point to problems in achieving a reasonable quality of life (Shield, 1988; Lidz et al., 1992; Gubrium, 1993). After all, a nursing facility is more than a setting in which residents receive care, it is their home, although for some it is only a temporary home. Unfortunately, however, the physical structure of most nursing facilities allows for little privacy, especially as most residents must share rooms. Partly because of routines and conventions—many of which are providers’ responses to regulations—and partly because of room sharing, residents maintain little personal control over many aspects of their daily lives. Disputes arise over matters such as roommate and table-mate selection. Residents who are cognitively intact complain about enforced proximity to residents who are cognitively impaired. Residents who are cognitively impaired may be restricted in their activities, both for their own safety and so that they do not intrude on the space and possessions of others. Many residents may lack meaningful activities. Kane and Caplan (1990) pointed out the myriad difficulties of developing normal lifestyles in traditional nursing facilities given heterogeneous populations, rules and regulations that govern conduct of residents, and lack of physical space and privacy. In 1987, partly as a result of an earlier IOM study (1986), Congress enacted a comprehensive nursing facility reform law that emphasized the need to ensure that residents achieve a good quality of life. Mandates in the law included new general conditions or standards for nursing facilities to meet regarding residents’ rights and quality of life. The same reform required that those who inspect nursing facilities observe and speak to samples of residents themselves to determine whether these conditions are met, rather than relying solely on medical records and staff reports. Despite the substantial progress of the 1987 reform, quality of life is an elusive concept to define and to measure in the nursing facility or LTC context. It encompasses such constructs as dignity, satisfaction, social involvement, autonomy, and happiness. For those who cannot participate in an interview because of cognitive or sensory impairments, the difficulties of measuring quality of life are immense. Even cognitively intact residents may

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act not report dissatisfaction for fear of reprisals or because they are unclear about the standard of care they should expect. Also, how does one balance quality of life as illustrated by the constructs listed above with narrower concepts about adequate quality of care and the safety of residents? Although facilities must respect residents’ choices, in some facilities concerns for safety and physical well-being continue to overrule residents’ preferences for particular lifestyles. Nursing facilities’ concerns about legal and regulatory liability often militate toward safety first (Kapp, 1987). Residential settings other than nursing facilities may permit more personal autonomy for residents (Mollica et al., 1992; Kane and Wilson, 1993), in part because fewer standards prevail about staffing, physical care, and safety. Some commentators are concerned, however, that such environments insufficiently protect many vulnerable adults. The hope is that new models of residential LTC will be developed that allow persons with severe disabilities to receive care while leading a normal lifestyle and achieving privacy and control over their immediate environment. Although good models of such care exist, perennial scandals suggest that many B&C homes offer very little service, in environments that fall far short of minimal adequacy. Quality of life, like quality of care, can be measured by structure, process, and outcomes. Indeed, Wilson (1993), writing about assisted living, argues that some structural standards for the environment are essential to autonomy and a normal lifestyle. She advocates private occupancy rooms with full baths, kitchenettes, locking doors, and individual temperature controls. Procedures for handling such issues as individualized care planning, resident governance, complaints and grievances, lost property, room transfers, and informed consent may well facilitate quality of life; LTC ombudsmen in some jurisdictions have been active in efforts to establish such procedures. Also, staff behavior that is respectful of the dignity and choice of residents is a key factor in achieving a high standard of quality of life. However, quality of life is best measured by the subjective well-being and satisfaction of each individual resident. ASSURING, ASSESSING, AND IMPROVING QUALITY Assuring quality in LTC residential facilities should proceed in three steps: (1) define quality in operational terms and establish standards for performance, (2) assess care to determine whether standards are met, and (3) correct problems that have been identified. The following discussion focuses on the quality assurance systems in nursing facilities; similar systems for B&C facilities have not been developed to the same degree and vary a great deal among states (Hawes et al., 1993; Phillips et al., 1994). Quality has been a preoccupation in nursing facilities for decades (IOM, 1986). The ombudsman program actually arose in response to the widespread

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act perception of problems in nursing facility quality. Over the years, however, quality assurance activities have multiplied and strengthened; therefore the ombudsman program must now be viewed in relationship to other activities in place in nursing facilities. Out of concern for quality of care and quality of life in nursing facilities, several policies have been put in place. For example, all nursing facilities are licensed by the states in which they are located. Nursing facilities receiving payment from Medicaid and Medicare (virtually all nursing facilities in the country) are certified by the government; the rules for certification are established federally, but a state agency, usually a unit within the department of health, actually conducts the inspections, known as “surveys.” Local health and safety inspectors typically examine nursing facilities to make sure that they are following building codes, food safety codes, fire codes, and other ordinances. Although sometimes difficult to obtain, licensing inspections and certification surveys are available to the public. Historically, the effectiveness of remedies to correct problems in nursing facilities has been limited. States may employ many strategies to correct problems in nursing facilities, ranging from educational and consultative approaches to punitive or coercive approaches. “Carrots” for improving good performance include consultation, educational programs, and (slightly more coercive) peer pressure from role models or feedback on a facility’s performance compared with peers. “Sticks” to improve performance include civil fines, withdrawal of license or certification, holds on new admissions, receivership actions, and criminal procedures. The history of quality assurance in nursing facilities, which is beyond the scope of this report, is reviewed in a 1986 IOM study that made far-reaching recommendations for federal policy in this area. As a result of the 1986 IOM study and the subsequent 1987 legislation, the following changes were made: New quality standards were developed in four areas: quality of care, resident assessment, residents’ rights, and quality of life. A standardized resident assessment instrument, known as the minimum data set, was established, and all nursing facilities are expected to use it to assess each resident at intervals and as a basis for care planning. Surveys became oriented to resident outcomes and surveyors began to obtain more information directly, by observing and interviewing residents. A concerted effort was made to reduce use of chemical and physical restraints (e.g., unnecessary sedatives, trunk restraints such as vests, geri-chairs that prevent rising, and limb restraints). Training standards and requirements for competency evaluation were developed for nursing assistants. Preadmission screening was mandated for individuals whose primary diagnosis is mental retardation or mental health problems.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Intermediate sanctions, such as fines, were recommended, and a new series of rules on enforcement procedures developed (although the final rules have not yet been published). In 1987, these changes began to be phased in—a slow and lengthy process that is far from complete. Although the Health Care Financing Administration of the Department of Health and Human Services (DHHS) at the federal level and various state certification agencies bore the responsibility of implementing these changes, LTC ombudsman programs have been active in advocating for changes, monitoring the conduct of regulatory reform, providing training and consultation to state surveyors and the staff at individual facilities on quality of life and rights issues, training at the individual facility level, and informing residents and families about the reform. Thus, ombudsman activities for the past decade have been concerned with and shaped by the anticipation, inception, and implementation of new laws and regulatory reforms. THE INSTITUTE OF MEDICINE STUDY The LTC ombudsman program is relied on to address and solve many of the ills that presently afflict the LTC sector in this nation. Indeed, the program currently serves as a model for “health care ombudsman” programs that may be deemed desirable (or necessary) as broader health care reform moves forward in the United States. However, the effectiveness of this program is not well understood and neither is its potential for providing a meaningful impact beyond the relatively narrow settings it currently serves. Understandably, policymakers—at the urging of ombudsmen themselves—concluded that a more in-depth examination of the program was warranted, in order to examine its present strengths and weaknesses and its potential future contributions. To obtain this examination, the Congress of the United States directed, in the 1992 reauthorization of the OAA, that the Commissioner on Aging of the Administration on Aging (AoA) conduct a study of the state LTC ombudsman programs. This report is the culmination of that work, which commenced in October 1993. The IOM appointed a 16-member expert committee chaired by Carroll L.Estes, Ph.D., of the University of California, San Francisco. (For a complete list of committee members and their affiliations see the committee roster on page iii. For biographical sketches of the committee members, see Appendix D.) The committee comprised individuals recognized for their expertise in LTC, medicine, medical sociology, health care policy and research, clinical research, health law, health care administration, state government policy and program administration, consumer advocacy, public health, voluntarism, and the LTC ombudsman program.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act The committee was charged to assess the effectiveness of the LTC ombudsman programs in the areas set forth in Section 211 of the 1992 OAA amendments. Also, the committee was charged to identify and, when appropriate, make recommendations on public policy strategies by which the program can better achieve its objectives. The committee’s deliberations address the following: the availability of, access to, unmet need for, and effectiveness of the ombudsman program for residents of LTC facilities (including B&C facilities and other similar adult care facilities); the adequacy of federal and other resources available to operate the programs throughout the United States; the extent of compliance and an analysis of factors that enhance or impede compliance with the program’s mandates and standards; the presence of any actual and potential conflicts of interest in the administration and operation of the programs; and the need for and feasibility of providing ombudsman services to older individuals who do not reside in LTC facilities but are users of health and LTC services, such as home health care. This analysis is to draw from existing state ombudsman programs that serve elderly individuals who reside in settings other than LTC facilities. To inform itself on issues pertaining to this charge, the committee engaged in several factfinding activities. Information was gathered from site visits; commissioned papers; structured, systematic contacts with directors of state units on aging, state and local LTC ombudsmen, LTC physicians, and grassroots advocacy groups; a one-day invitational symposium; a public hearing; two “open-mike” sessions at national professional conferences; discussions with four national associations of LTC facility providers; and a technical panel that was convened twice and called upon as needed throughout the course of the study. (For more detail on the committee’s activities, see Appendix C.) ORGANIZATION OF THIS REPORT This report addresses the issues raised by the congressional mandate and its charge. The committee offers findings and recommendations where it concluded that current strengths of the state LTC ombudsman program could be built upon or present deficiencies warranted explicit correction. Before moving into questions related to policy, the report describes in Chapter 2 the current status of the ombudsman program. Chapter 3 then discusses the question of whether the program complies with current mandated activities and

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act responsibilities. Chapter 4 assesses the conflicts of interest found in the administration and operation of the program. Chapter 5 explores in more depth the committee’s views on the program’s effectiveness and offers some ideas about how program effectiveness might be enhanced. Chapter 6 examines the adequacy of the program’s resources. Chapter 7 inquires into the need and feasibility of an expansion of the present program into other populations and other settings. Finally, Chapter 8 presents the committee’s view of the future of LTC and what part the LTC ombudsman program will play in it. Appendix A provides descriptive information on OAA programs and the network of agencies providing them. Appendix B is the statutory base for the LTC ombudsman program (Title VII, Chapter 2, of the OAA). Appendix C gives details on study activities. Appendix D provides biographical information on committee members.