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Improving the Quality of Care in Nursing Homes (1986)

Chapter: 1. Introduction and Summary

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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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Suggested Citation:"1. Introduction and Summary." Institute of Medicine. 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press. doi: 10.17226/646.
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1 Introduction and Summary PURPOSE OF THE STUDY This is the report of a study of government regulation of nursing homes (excluding intermediate care facilities for the mentally retarded). The study's purpose was to recommend changes in regulatory policies and procedures to enhance the ability of the regulatory system to assure that nursing home residents receive satisfactory care. In May 1982, the Health Care Financing Administration (HCFA) announced a proposal to change some of the regulations governing the process of certifying the eligibility of nursing homes to receive payment under the Medicare and Medicaid programs. The changes were responsive to providers' complaints about the unreasonable rigidity of some of the requirements. The proposed changes would have eased the annual inspection and certification requirements for facilities with a good record of compliance, and would have authorized states, if they so wished, to accept accreditation of nursing homes by the Joint Commission on Accreditation of Hospitals (JCAH) in lieu of state inspection as a basis for certifying that Skilled Nursing Facilities (SNFs) and Intermediate Care Facilities (ICFs) are in compliance with 1

2 / NURSING HOME CARE the federal conditions of participation and operating standards. The HCFA proposal was strongly opposed by consumer groups and most state regulatory agencies because the proposed changes were seen as a movement in the wrong direction--that is, towards easing the stringency of nursing home regulation--and because they did not deal with the fundamental weaknesses of the regulatory system. The controversy generated by the proposal caused Congress in the fall of 1982 to order the HCFA to defer implement- ing the proposed changes until August 1983 and ultimately resulted in a HCFA request to the Institute of Medicine (IOM) of the National Academy of Sciences to undertake this study. The contract between the HCFA and the IOM became effective on October 1, 1983. The charge to the IOM Committee on Nursing Home Regulation was to under- take a study that would "serve as a basis for adjusting federal (and state) policies and regulations governing the certification of nursing homes so as to make those policies and regulations as appropriate and effective as possible." THE PUBLIC POLICY CONTEXT OF THE STUDY There is broad consensus that government regulation of nursing homes, as it now functions, is not satisfactory because it allows too many marginal or substandard nursing homes to continue in operation. The implicit goal of the regulatory system is to ensure that any person requiring nursing home care be able to enter any certified nursing home and receive appropriate care, be treated with courtesy, and enjoy continued civil and legal rights. This happens in many nursing homes in all parts of the country. But in many other government-certified nursing - homes, individuals who are admitted receive very inadequate--sometimes shockingly deficient--care that likely to hasten the deterioration of their physical, mental, and emotional health. They also are likely to have their rights ignored or violated, and may even be

INTRODUCTION AND SUMMARY / 3 subject to physical abuse. The apparent inability of the current regulatory system either to force substandard facilities to improve their performance or to eliminate them is the underlying circumstance that prompted this study. In the past 15 years many studies of nursing home care have identified both grossly inadequate care and abuse of residents.2~23 Most of the studies revealing sub- stantial evidence of appallingly bad care in most parts of the country have dealt with conditions during the 1970s. However, testimony in public meetings conducted by the committee in September 1984, news reports published during the past 2 years, recent state studies of nursing homes, and committee-conducted case studies of selected state programs have established that the problems identified earlier continue to exist in some facilities: neglect and abuse leading to premature death, permanent injury, increased disability, and unnecessary fear and suffering on the part of residents. Although the incidence of neglect and abuse is difficult to quantify, the collective judgment of informed observers, including members of the committee and of resident advocacy organizations, is that these disturbing practices now occur less frequently. Residents and resident advocates, both in public hearings and in a study of resident attitudes conducted by the National Citizens' Coalition for Nursing Home Reform,24 expressed particular concern about the poor quality of life in many nursing homes. Residents are often treated with disrespect; they are frequently denied any choices of food, of roommates, of the time they rise and go to sleep, of their activities, of the clothes they wear, and of when and where they may visit with family and friends. These problems may seem at first to be less urgent than outright neglect, but when considered in the context of a permanent and final living situation they are equally unacceptable. The quality of medical and nursing care in many homes also leaves much to be desired. Geriatrics is becoming, in the mici-l9SOs, an area of concentration within internal

4 / NURSING HOME CARE medicine, family medicine, and psychiatry. (Both the American Academy of Family Practice and the Board of Internal Medicine have decided to establish certificates recognizing geriatric competence.) Many conditions that were once accepted as inevitable consequences of old age now can be treated or alleviated. Physicians and nurses in nursing homes are not always aware of advances in geriatrics so that even in pleasant and humane institutions examples may be found of residents whose disability could be reduced, whose pain could be controlled, or whose depression could be treated if they received proper medical care. A lower standard of medical and nursing practice should not be accepted for nursing home residents than is accepted for the elderly in the community. Given the fragility of nursing home residents and their dependence on medical care for a satisfactory life, practice standards should even be higher. Thus, physicians, as well as nurses, have substantial responsibility for quality of care in nursing homes. These observations do not mean that the picture of American nursing homes is entirely gloomy or that the regulatory efforts of the past decade have been entirely unsuccessful. Today, many institutions consistently deliver excellent care. Good care can be observed in all parts of the country; it exists under widely varying reimbursement systems and all types of ownership. Such facilities serve both as evidence that overall performance can be improved and as markers for how that improvement can be accomplished. The question asked by the committee was: How can the problems observed in nursing homes in the l980s best be addressed? The current national tone is antiregulatory. Nursing homes are a service industry. Could not the observed problems be solved by decreasing regulation and allowing market forces to work? This viewpoint was advocated by some who spoke at public meetings or submitted ideas to the committee. Those who wished to see a freer market were particularly anxious to have restrictions on bed supply lifted. A freer market was not considered by the committee to be a serious alternative to more effective government regulation for two reasons.

INTRODUCTION AND SUMMARY / 5 First, under present circumstances, a free market for nursing home care will remain a theoretical concept until such time, if ever, that a major portion of the financing of long-term care services has shifted from public sources (primarily Medicaid) to private insurance. This is not likely to occur very soon. About half of current nursing home revenues come from appropriated state and federal funds through state-controlled Medicaid programs. Most people enter nursing homes as private-pay residents and soon "spend down" their income and assets until they become eligible for Medicaid. With few exceptions, community-based or home-based long-term care services--that might keep some people who require long-term care from entering nursing homes--are not eligible for Medicaid or other sources of public support. Most states maintain tight control on bed supply to control growth of their Medicaid budgets. They have learned that if they allow uncontrolled growth of nursing home beds, the additional beds would quickly be filled with residents now being cared for privately and informally in the community. Such residents would initially be private-pay, but would soon "spend down" to Medicaid eligibility. Second, historical experience hardly supports an optimistic judgment about the effects on quality of care of allowing market forces, to exert the primary influence over nursing home behavior. Nursing homes were essentially unregulated in most states prior to the late 1960s. Their operations were governed almost entirely by market forces, and the quality of care was appalling. (See Appendix A.) Persons needing nursing home care generally suffer from a large array of physical, functional, and mental disabilities. A significant proportion of all residents are mentally impaired. The average resident's ability to chose rationally among providers and to switch from one provider to another is therefore very limited even if bed occupancy rates are low enough to make such choices feasible. But they are not. In most communities, bed availability is the controlling factor- because occupancy rates are very high. Moreover, some who reside in nursing homes lack close family to act as their advocates. Even

6 / NURSING HOME CARE if they have family, the choice of a nursing home is usually made relatively hastily in response to a new illness or disability level; once in an institution, the opportunities for transfer to another nursing home are very limited.25 The difficulties inherent in choosing among nursing homes are further exacerbated by the financial status of manY residents. Because of the costs few individuals or families can afford a prolonger! nursing home stay. As a result, government programs, primarily Medicaid, assist in paying for more than 60 percent of all care. In most states, Medicaid rates are lower than those Laid bY private residents. . · ~. 9~ As a result the nursing home market is in tact two markets--a preferential one for those who can pay their way and a second, more restricted one, for those whose stays are paid by Medicaid.27 Regulation is essential to protect these vulnerable consumers. Although regulation alone is not sufficient to achieve high-quality care, easing or relaxing regulation is inappropriate under current circumstances. The federal regulations now governing the certification of nursing homes under the Medicare and Medicaid programs have been in place, essentially unchanged, since the mid-1970s. Their central purpose is to assure that nursing home resiclents28 receive adequate care in a safe facility and that they are not deprived of their civil rights. The regulations have a number of conceptual and technical weaknesses that were recognized almost from the time the regulations were promulgated. And, the regulations are administered and enforced very unevenly by the states. Yet there is consensus that regulations have made a positive contribution, although reliable comparative data are not available to support this judgment. The committee found that the consumer advocates, providers, and state regulators with whom it discussed these matters believe that a larger proportion of the nursing homes today are safer and cleaner, and the quality of care, on the average, probably is better than was the case prior to 1974. But there is substantial room for improvement. Providers, consumer advocates, and government regulators all are dissatisfied with specific aspects of the

INTRODUCTION AND SUMMARY / 7 regulations and the way they are administered.29 Consumer advocates (nursing home residents, their families, and representatives of organizations concerned with protecting the interests of nursing home residents) contend that the standards are inadequate and their enforcement is too lax because too many nursing homes that pass inspection still provide unacceptably poor or only marginally adequate care. Moreover, they contend that violations of residents' rights occur in many homes and that often such violations either are not detected or are ignored by the regulatory authorities. The providers (nursing home operators, administrators, and professional staff) are concerned with the excessive attention to detailed documentation, the emphasis on structural specificity with the inherent (and sometimes irrational and costly) inflexibility that such specificity implies, and with the ambiguity of some of the standards (for example, the use of such words as "adequate") that result in inconsistent, subjective interpretations by state and federal surveyors. Some government regulators at both state and federal levels believe there is merit in both sets of contentions. Since the present regulatory framework was set in place about 10 years ago, there have been developments that make possible a more effective regulatory system. There is deeper understanding of what is meant by high-quality care for nursing home residents and how to provide it, more knowledge of how to assess quality of care objectively, and better understanding of what it takes to operate a more effective quality assurance system. The nursing home industry itself has grown in managerial capability and professionalism. These developments make it possible now to redesign the regulatory system so that it will be much more likely to assure that all nursing homes provide care of acceptable quality.

8 / NURSING HOME CARE PERSPECTIVE ON THE ISSUES The Role of Nursing Homes In most places in this country, when an elderly (or disabled younger*) person requires more assistance in the activities of daily living30 than can be provided by immediate family or friends, and especially if the individual is incontinent and/or mentally impaired, he or she may be placed in a nursing home. Also, when an elderly patient, after surgery or an acute medical episode in a hospital, requires rehabilitative/convalescent nursing care for several weeks or months, and neither a rehabilitation hospital bed nor home health services are available in the community, the patient may be discharged to a nursing home. Home health services, congregate housing, domiciliary care, day-care centers, and other professionally organized arrangements exist in some communities and provide long-term care services to elderly persons with disabilities comparable to those found among some residents in nursing homes. Although more of these types of long-term care arrangements are being developed, they still represent collectively only a small fraction of the total person-days of care provided by nursing homes.3t In 1985, in most communities in this country, long-term care services for the physically frail and mentally impaired elderly are available only through informal support provided by family or friends or in nursing homes. Nursing homes must provide care to a very heterogeneous resident population. Some require short-term, intense rehabilitation services. Many others are incontinent, mentally impaired, or so seriously disabled that they require extensive and continuous care for months or years. A small fraction are younger people who are severely disabled. A few are simply very old and very fin 1980, 13 percent of nursing home residents were under 65 years of age. This figure is projected to drop to 9 percent by the year 2000. (See Appendix D, Table Q.)

INTRODUCTION AND SUMMARY / 9 frail but are mentally competent and alert and require only moderate assistance in the activities of daily living and opportunities to participate in activities to satisfy their psychosocial needs. It is not easy to provide high-quality care to meet such a broad spectrum of physical, medical, and psychosocial needs in one facility. Not all nursing homes admit all of these types of residents, but many do. If, in the future, alternate arrangements become available to provide proper care to some individuals requiring intensive short-term rehabilitation services (for example, stroke patients), and for those requiring on a long-term basis only moderate amounts of support services, nursing homes will not be expected to accommodate these kinds of residents. Nursing home beds are increasingly being filled with long-term, very disabled residents who cannot be cared for anywhere else. Pressures to admit a higher proportion of residents requiring "heavy care" (nursing home jargon referring to residents requiring at least 2-1/2 hours per day of personal and nursing care), many of whom are mentally impaired, has been experienced by nursing homes for some time. These pressures are certain to increase.32 There were about 15,000 nursing homes in operation in the United States in 1985, with a total of about 1.5 million beds, that are certified to receive patients/ residents under the Medicare and/or Medicaid programs.33 About 1,000 nursing homes and perhaps 6,000-7,000 "board and care" homes (sometimes referred to as "domiciliary care" facilities) without nursing services are licensed by the states but are not certified to accept Medicare or Medicaid payments.34 There are two types of nursing homes recognized in federal regulations: Skilled Nursing Facilities (SNFs) and Intermediate Care Facilities (ICFs). SNFs are required to be staffed and equipped to care for residents requiring skilled nursing care. ICFs are required to be staffed and equipped to care for residents requiring less nursing care and more personal service care. In practice, the states are not consistent in making distinctions between the two types of nursing homes: some states have almost no SNFs; others have almost no ICFs. Forty-three percent of all nursing homes are ICFs (Appendix D, Table

10/NURSING HOME CARE C). The mix of characteristics and service needs of the residents found in SNFs in those states that have few ICFs do not appear to differ significantly from those found in ICFs in states that have few SNFs. About 70 percent of the certified nursing homes, with 80 percent of the beds, are operated on a for-profit basis. Of the rest, 22 percent of the facilities are operated by nonprofit organizations and the other 8 percent are government-owned and -operated.35 In almost every state, occupancy rates average well over 90 percent, an indication that the demand for nursing home beds is very high.36 Demographic trends--the rapidly growing numbers of persons over 75 years old, about 1 in 10 of whom are now in nursing homes--make it certain that the demand for nursing home beds will continue to grow. A recent report projected the population aged 75 and over in the year 2000 to be 17.3 million, a 46 percent increase over the 1985 population of that age group. For people 85 years of age or older, one in five of whom is currently in a nursing home, the numbers are projected to increase from 2.85 million in 1985 to 5.1 million in 2000, an 80 percent increase.37 In 1984, over $30 billion was spent on nursing home care.38 According to Department of Labor estimates, "nursing and personal employed over 1 million people in 1982.~9 Quality of Care and Quality of Life care" facilities Providing consistently high quality care in nursing homes to a varied group of frail, very old residents, many of whom have mental impairments as well as physical disabilities, requires that the functional, medical, social, and psychological needs of residents be individually determined and met by careful assessment and care planning--steps that require professional skill and judgment. This process must be repeated periodically and the care plans adjusted appropriately. Not all nursing homes have enough professional staff who are trained and motivated to carry out these tasks competently, consistently, and periodically. Care is expensive because it is staff-intensive. To hold down costs, most of the

INTRODUCTION AND SUMMARY / 11 care is provided by nurse's aides who, in many nursing homes, are paid very little, receive relatively little training, are inadequately supervised, and are required to care for more residents than they can serve properly. Not surprisingly, the turnover rate of nurse's aides is usually very high--from 70 percent to over 100 percent per year--a factor that causes stress in resident-staff interactions. Quality of life is intimately related to the quality of resident-staff relationships. Kindness, courtesy, and opportunities to choose activities, food, and mealtimes are involved, as are factors such as privacy for intimate conversations with family or friends. This is difficult when most rooms are semiprivate--as is the case in most nursing homes. Making one's room as home-like as possible is important to many residents, but fire safety codes may limit the use of personal furniture or other belongings. And, it may not be possible to choose or change one's roommate. Difficult as these problems may be, they can be handled satisfactorily by competent management and staff. In most regions of the country, very good homes can be found--places that are well-managed, where competent, caring staff provide services in a conscientious, sensitive manner; where the dignity, privacy, and human needs of the residents are respected and provided for in thoughtful, even imaginative ways. There are both for-profit and not-for-profit homes in this group. The exact number of very good homes is unknown because no objective, reliable methods exist for making interfacility comparisons of quality. The committee has the impression, obtained primarily from the Health Care Financing Administration's data collected from state reports on nursing home deficiencies, and from discussions with knowledgeable state and federal regulatory agency personnel, that the poor-quality homes outnumber the very good homes.

12 / NURSING HOME CARE The Regulatory System Government regulation of nursing homes has two broad goals: (1) consumer protection, that is, to ensure the safety of residents, the adequacy of care they receive, and that their legal rights are protected; and (2) to control and account for the large public expenditures-- mainly Medicaid--used to pay for nursing home care. Regulation for quality assurance in nursing homes involves three main components, all of which are more or less embodied in both federal and state regulations and are, to some extent, intertwined with one another. They include 1. developing and promulgating explicit criteria (conditions of participation and standards) governing all aspects of the operation of nursing homes; 2. developing and applying standard procedures and criteria for monitoring the performance of nursing homes and for determining the extent to which nursing homes are complying with the performance criteria (monitoring procedures include periodic surveys of nursing homes, inspections of care, and investigations of complaints of poor care, neglect, or abuse of residents); and 3. enforcing compliance with the performance criteria in cases where unsatisfactory performance is found. Both the federal and state governments are actively involved in regulating nursing homes, but the states' role is much larger. There is no American nursing home regulatory system; there are regulatory systems in 50 states and the District of Columbia with substantial differences in such things as organizational arrangements, resources committed to the licensure and certification process, the size and composition of the survey teams and the amount of time they spend inspecting nursing homes, the extent and nature of the training provided to surveyors, and in organizational ethos, that is, whether the agency is "enforcement-oriented" or "compliance- oriented." (This issue is discussed in Chapter 4.) The federal government prescribes detailed standards that must be met by certified nursing homes, but it is the

INTRODUCTION AND SUMMARY / 13 states that inspect (survey) the nursing homes to determine the extent of compliance with the certification standards. Although the federal government has the authority to "look behind" the states' survey and certification activities, it has never allocated much staff to this function. It conducts look-behind actions in about 3 percent of the facilities annually. The states license nursing homes, but their licensure standards vary widely. About one-quarter have made them identical to the federal certification standards. About one-quarter have licensure standards that are less stringent than the federal certification standards. About half have more stringent licensure standards. (Appendix C contains a report of a survey of state licensure and certification agencies, conducted by the committee during 1984-1985, from which these data were obtained.) The states also are responsible for enforcing the standards. The only federal sanction available, until recently, was Recertification of a facility--that is, to make the facility ineligible to receive Medicaid or Medicare funds. In 1981 a federal intermediate sanction--suspension of payments for new admissions--was authorized by law. But regulations specifying how this authority should be used had not been issued as of February 1986. Since Recertification is a very drastic measure when beds are in short supply, it is seldom invoked. Most states rely on a set of "intermediate" sanctions (fines, suspension of admissions, receiverships) available under their licensure authorities. -But availability and use of intermediate sanctioning authority vary widely with states, as do enforcement attitudes and actions. Tolerance of inadequate care also appears to be widespread. The history of nursing home regulation is relatively brief. Until the passage of the Medicare and Medicaid legislation in 1965, the regulation of nursing homes was entirely a state responsibility. (The history of the development of the federal role in nursing home regulation is summarized in Appendix A.) By 1965, there were hundreds of thousands of residents in nursing homes that did not meet Hill-Burton fire and health standards and were substandard in other respects as well--for example,

14 / NURSING HOME CARE with poorly trained or untrained staff and few of the necessary services. The problems were described extensively by the U.S. Senate Special Committee on Aging that conducted several sets of hearings starting in 1963. (See Appendix A.) The initial efforts to set federal standards for both Medicare "extended care facilities" (ECFs) and for Medicaid SNFs quickly exposed the problems. Of 6,000 facilities that applied for certification as ECFs, only 740 could be certified the first year. More than 3,000 others were certified as being in "substantial compliance." Initially, the federal government planned to use ECF standards for Medicaid SNFs, but this idea was dropped when it became evident that most homes could not qualify. The 1967 amendments to the Medicaid legislation authorized two categories of Medicaid nursing homes: SNFs and ICFs. Development of certification regulations for both categories proved to be very controversial. The Congress, prompted by consumer advocates and some professional groups, wanted stringent standards to protect the patients/residents. Some state governments and the nursing home industry were concerned about costs of stringent standards and the ability of many nursing homes to meet them. The final Medicaid SNF regulations were issued in 1974 and the ICE regulations in 1976. There was substantial evidence made public throughout this period that very large numbers of nursing homes were not in compliance with federal standards and that most states were not enforcing them. In 1974, the Office of Nursing Home Affairs in the U.S. Department of Health, Education, and Welfare (HEW) began a study of the quality of care in nursing homes. The study found that "the extent to which nursing homes comply with the federal standards of care varies widely."40 The study also found that the survey and certification regulations were concerned only with a facility's capacity to provide the required services, not with the quality of the services being provided. Substantial efforts were made to develop new, and to revise, strengthen, and clarify existing, standards in the late 1970s.

INTRODUCTION AND SUMMARY / 15 In 1980 the HCFA published its proposed new regulations in the Federal Register. These would have, among other things, 1. combined the SNF and ICE regulations into a single set applicable to all nursing homes; 2. consolidated all resident care planning requirements into a single condition of participation requiring a resident care management system that called for interdisciplinary teams to assess residents and plan their care; and 3. elevated the residents' rights standard to a condition of participation. Only one of the 1980 proposed changes was actually promulgated: the elevation of residents' rights from a standard to a condition. This was signed in January 1981 by the outgoing Secretary of the U.S. Department of Health and Human Services (HHS), but was promptly rescinded by the new Secretary. Thus, the regulations that were issued in the mid-1970s are still in place today despite widespread agreement that they are inadequate. A recent legal development--the 1984 decision by the Tenth Circuit Court of Appeals in the Smith v. Heckler case--requires the HCFA to modify the federal certification regulations so that they are more effective in assuring quality of care in nursing homes. This lawsuit (originally filed as Smith v. O'Halloran) was filed in 1975 on behalf of a group of nursing home residents in a Denver, Colorado, facility, alleging poor care, violation of residents' rights, and failures by government to monitor the nursing home. Plaintiffs sued the nursing home owners as well as the state health and Medicaid agencies and the Secretary of HEW. During the trial, residents proved a variety of violations of regulatory standards, including theft of personal funds, overuse of psychotropic drugs, inadequate care resulting in decubitus ulcers, inadequate skin and nail care, inadequate bowel assistance, and sanitation problems. The case against the government agencies was based on the theory that the Medicaid statute requires a federal nursing home survey process that determines whether

16 / NURSING HOME CARE residents are receiving care they need, not merely whether facilities have the theoretical capacity to provide it. In 1978 the Colorado health and Medicaid agencies took the unprecedented step of agreeing with the nursing home plaintiffs and joining them in the case against HEW. The state's theory was that the federal survey system was both inadequate to determine whether residents received needed care and mandatory upon the state so that it could not develop a more appropriate system for Medicaid certification decisions.42 The case was nearly settled in 1980 when the HHS published proposed regulatory revisions that would have integrated a "patient care management system" into the survey system to evaluate actual resident care. But, these regulations were not promulgated, so the case was tried in 1982. The federal district court found that (1) serious deficiencies exist in some nursing homes, which it labeled "orphanages for the aged," (2) the current survey system is facility-oriented rather than resident-oriented, and (3) it is feasible for HHS to develop a survey system focusing on resident needs and care delivery. However, the court held that as a matter of law the Secretary of HHS had no duty to develop such a system under the Medicaid statute. The Federal Tenth Circuit Court of Appeals reversed the lower court's decision in 1984, holding that the Medicaid law does impose upon the Secretary a duty "to establish a system to adequately inform herself as to whether the facilities receiving federal money are satisfying the requirements of the Act, including providing high quality patient care."4t The appeals court returned the case to the district court to determine what survey system would satisfy the Secretary's duty. The HCFA has indicated to the court that it will implement a resident-oriented survey system by January 1, 1986. The recommendations contained in this report follow from the committee's conclusion that profound changes are needed in the regulatory system to make it substantially more effective. The changes thus far proposed by the HCFA in response to the court decision do not address all of the significant problems that limit the effectiveness of the current regulatory system.

INTRODUCTION AND SUMMARY / 17 Other Factors Affecting Quality of Care in Nursing Homes Other Regulatory Policies Three areas of regulatory policy other than certification regulations that may affect the quality of care provided by nursing homes are Medicaid payment policies, control of bed supply, and information reporting requirements. Despite the importance of these policy areas, the committee did not make recommendations on them for two reasons: (1) It was beyond the scope of its charge to address these issues seriously as part of its study effort, and (2) there is not enough clear evidence or other information now available to support specific recommendations for federal policy in these areas. Nursing home care is paid for mainly from the private incomes or assets of the residents or their families and from Medicaid for those whose incomes and assets are low enough to qualify them for such support. There is almost no private health insurance coverage for long-term nursing home care. Half of the industry revenues, paying for part or all of the care of about two-thirds of the nursing home residents, comes from state Medicaid programs.43 In most states Medicaid reimbursement rates are lower than the rates charged by the same nursing homes to private pay residents.3t And because most states also have restricted the expansion of nursing home beds, the demand for beds exceeds the supply in all but a very few states. This supplier's market is advantageous to nursing home management because it allows nursing homes to be selective in their admissions and still keep their beds full. Administrators try to optimize (from their perspective) the mix of residents in their homes. In practice, this usually means they will favor admission of private-pay over public-pay residents, and--depending on the design of the state payment system--those who require less care over those who require a great deal. Demographic trends are likely to exacerbate the access problem, particularly for Medicaid and heavy-care residents, because the total number of people requiring long-term care is growing, and

18 / NURSING HOME CARE the proportion requiring a great deal of care also is growing. Each state establishes its own Medicaid eligibility rules, payment policies, and the amounts to be paid to nursing homes for allowable services to eligible residents. The federal law simply requires that the states' Medicaid payment rates be on a "reasonable cost-related basis," but an operational definition of this phrase has never been issued by the federal government. State payment methods and amounts vary widely. Although Medicaid payment policies contain powerful behavioral incentives for nursing home operators, not enough is now known about this complex question to make specific recommendations for federal policy. Regulation of nursing home bed supply also is a state responsibility. Most states have maintained tight controls over the expansion of nursing home beds, despite strong evidence of excess demand, to constrain growth of their Medicaid budgets. The issue and the considerations affecting policy on controlling bed supply are discussed in Chapter 7. Timely access to necessary data and other information is the life blood of effective regulation and of sound public policy development. But despite the importance of both federal and state government regulation in the nursing home industry, and the large proportion of public funds that flow into the nursing homes, there is a striking paucity of detailed information available about almost every aspect of nursing home operations. Information about the demographic characteristics of the residents, their medical, cognitive, and functional disabilities, from where they were admitted and, for those who are discharged, to where they are discharged, date back almost 10 years or are not available at all. Accurate, complete, and current information on the characteristics of nursing homes (their number, size, ownership, certification status, age) is not readily available.45 Within state governments, the availability of information, and the way it is kept, varies widely. Key financial information also is not available. What proportion of Medicaid-eligible residents contribute significantly to the cost of their care? How much? How

INTRODUCTION AND SUMMARY / 1 9 does this vary by state? The federal government does not know. Very little is known about the effects of the "spend-down" requirement, the process by which private-pay nursing home residents "spend down" their assets to cover the cost of their care until they become eligible for Medicaid. How long does it take? What fraction of residents "spend down"? Data are fragmentary. Information on changing ownership patterns and on admission anti discharge patterns are obtainable only from ad hoc studies conducted in limited areas for particular purposes. The last major survey (a sample survey) of nursing homes and residents was conducted by the National Center for Health Statistics in 1977. A new survey was started late in 1985, but the findings will not be available until late 1986 or 1987. Information on the outcomes of inspections and on enforcement actions also is incomplete and unreliable, both at the state and national levels. By way of contrast, vast amounts of relatively current data and information are available about short-term hospitals, their patients, and finances. If more effective regulation and more rational public policy are to be developed in the long-term care area, serious efforts will have to be made to obtain the necessary data. The committee is firmly convinced that the federal government, particularly the cognizant committees of the Congress and the Department of Health and Human Services, should give this matter priority attention. Consumers, the Community, and Nursing Home Management and Sta If Three other sets of factors affect quality of care and quality of life in nursing homes: (1) consumer involvement and consumer advocacy, (2) community interest and involvement in nursing homes, and (3) the motivation, attitudes and qualifications of nursing home management and staff. (All three are discussed in Chapter 6.) Active participation by the residents in some aspects of management policy and care decisions can have important effects on quality of care and quality of life. Many

20 / NURSING HOME CARE important facility policy decisions rest on value judgments--they are not based entirely, or even primarily, on technical or managerial imperatives. Because resident quality of life is affected by such decisions, resident partici- pation and preferences should be sought. Although the regulatory system can facilitate resident participation in decision-making, ultimately it depends on the residents themselves, their families, consumer advocates, and, most important, on the attitudes of the management and staff of the facilities. Consumer advocacy plays an important role in quality assurance. Consumer advocates are essential because residents are a particularly vulnerable group and nursing home regulators are only occasional visitors to nursing homes. Advocates handle complaints and help individual residents in a variety of other ways. They represent residents as a group to management and government agencies. The Long-Term Care Ombudsman Program, authorized in the Older Americans Act in 1978, provides a statutory basis for the role of consumer advocacy. Unfortunately, the ombudsman program, as presently constituted and financed, is much less effective than it should--and could--be. Recommendations to strengthen it are contained in Chapter 6. Outside visitors from the community in which the nursing home is set have an important positive effect on the quality of life of residents and on the quality of performance of the staff. It is thus very important to stimulate and facilitate community involvement in nursing homes. Positive motivation and attitudes on the part of the owners and managers of nursing homes, and well-trained, well-supervised, and properly motivated staff are essential for high-quality care. Although pressures by regulators and consumers can have important positive effects on staff and management attitudes and behavior, they are not sufficient to produce the motivation and attitudes that will attract the kinds and quality of personnel needed to provide high quality of care and quality of life to nursing home residents. Such attitudes must be nurtured by sources within the industry and the educational and professional institutions associated with

INTRODUCTION AND SUMMARY / 21 it. The regulatory system can encourage this process by recognizing and rewarding outstanding performance. CONCLUSIONS This report contains the following major conclusions derived in part from the prior experience and knowledge of the committee members and in part from the findings of this study. 1. Quality of care and quality of life in many nurs- ing homes are not satisfactory. Despite extensive government regulation for more than 10 years, some nursing homes can be found in every state that provide seriously inadequate quality of care and quality of life. At the same time, examples of good and even excellent care can be found in other nursing homes in the same states. Because most nursing home residents live in nursing homes for many months or years, quality of life is as important as quality of care in these institutions. It is possible to define and assess quality of care and at least some aspects of quality of life. Furthermore, it is possible to develop and employ techniques for quality assurance that incorporate reasonably objective measures to judge the quality of care being provided by a facility. The concepts of quality, quality assessment, and quality assurance are discussed in Chapter 2, and specific recommendations to strengthen the quality assurance effectiveness of the survey and certification regulations are discussed in Chapters 3, 4, and 5. 2. Lore effective government regulation can substan- tially improve quality in nursing homes. A stronger federal role is essential. Regulation of nursing homes both by state and federal governments is necessary to assure safety and acceptable quality of care for nursing home residents because of the vulnerability of the resi- dents and the lack of institutional choices available to them. The committee is convinced that more effective government regulation can achieve substantial improvement in quality of care in many nursing homes in all states. A stronger federal leadership role is essential for

22 / NURSING HOME CARE improving nursing home regulation because not all state governments have been willing to regulate nursing homes adequately unless required to do so by the federal government. Chapters 3, 4, and 5 discuss these issues at length. 3. Specific improvements are needled! in the regulatory system. A major reorientation of the regulatory system is needed to make it focus on the care being provided to residents and the effects of the care on their well-being. This will require revision of most aspects of the regulatory system, including the nursing home performance criteria and standards (the "conditions of participation" and "standards"), the surveillance (survey) process, compliance (enforcement) policies and procedures, and the systems for collecting and analyzing the data and other information needed for effective regulation. Chapter 3 discusses the problems with the current criteria and recommends some major changes. Chapter 4 discusses the problems with the survey process and recommends changes to strengthen it. Chapter 5 discusses enforcement problems and recommends ways to strengthen and improve the enforcement of performance standards. 4. There are opportunities to improve quality of care in nursing homes that are independent of changes in the Medicaic! payment policies or beet supply. It is especially important to reorient and strengthen nursing homes to reduce or eliminate the many remediable weaknesses in the process of monitoring nursing home performance, and to strengthen compliance (enforcement) policies and procedures. Immediate steps to remedy current inadequacies in these three interrelated aspects of the regulatory system should be undertaken immediately. The committee recognizes that Medicaid payment policies clearly influence management decisions on admission and retention of residents; on the numbers, types, qualifications, and training of staff; and on the amount and quality of food. supplies, equipment and other resources to be purchased. All of these decisions affect quality of care. Unfortunately, the evidence of the effects on nursing home operations--and especially on quality of care--of different state approaches to Medicaid reimbursement policy is still not conclusive enough, nor

INTRODUCTION AND SUMMARY / 23 is there sufficient professional consensus, to enable the committee to recommend adoption of a specific approach. For various reasons--including lack of precision in quality assessment--the complex relationships between costs, charges, reimbursement methods and amounts, and quality are not yet clear. There obviously must be a minimum reimbursement amount below which it is not possible to provide adequate care. But available evidence has not shown what that amount is. Since this is an issue of major importance, the HCFA should continue to support research and demonstration projects on the effects of Medicaid reimbursement policy on quality of care and quality of life in nursing homes. In this connection, one of the major recommendations discussed in Chapter 3--resident assessment--will make it feasible to arrive at objective methods of assessing quality of care that will be important for such studies. The issues are discussed more fully in Chapter 7. Similarly, bed supply policy is a difficult issue. Although there clearly is excess demand for nursing home beds in most states, there also is evidence that some nursing home residents could be better cared for in alternative long-term-care settings if such were available. The main policy argument for constraining nursing home bed supply is that increasing bed supply would inhibit the development of more appropriate alternative long-term-care facilities and programs. But constraining the bed supply does not appear to have accelerated development of such programs because their development is probably tied closely to changes in payment policy. With only a few exceptions, the states control nursing home bed supply very tightly for a short-term political reason: to constrain growth of their Medicaid budgets. There is no federal policy either on bed supply or to facilitate development of alternatives to nursing home care. Some members of the committee favor policies that would encourage states to ease bed shortages. But the committee as a whole does not believe there is sufficient evidence or sufficient professional consensus to recommend either to the federal government or to the states a specific policy until the much larger

24 / NURSING HOME CARE issue of more appropriate financing of long-term-care services has been addressed. 5. Regulation is necessary but not sufficient for high-quality care. Skilled and properly motivated man- agement, well-trained, well-supervised, and highly motivated staff, community involvement and support, and effective consumer involvement all are required. Although most of these factors are affected by regulation, they also contain important areas that are not. These issues are discussed, and recommendations are made, in Chapter 6. 6. A system to obtain standardized data on residents is essential. To reorient the regulatory system from its current "structural" and "facility-centered" orienta- tion to a "resident-centered" and "outcome-oriented" approach will require development and introduction of a standard resident assessment data system that has multiple uses both for nursing home management and for government regulatory agencies. This concept is discussed in Chapters 2, 3, and 7. 7. The regulatory system should be dynamic and evolutionary in outlook. Specific regulatory standards should be modified to reflect changes in the art of long-term care, in experience with the regulatory system, and in the techniques of assessing outcomes more objectively. The recommendations contained in this report collectively require many changes in all aspects of the regulatory system. These recommended changes should not be viewed as definitive and final. The effectiveness of the recommended modifications in the regulatory system should be followed closely. Experience is likely to expose the need for further changes. An effective regulatory system cannot be a static structure; it has to be conceived as being dynamic and evolutionary. The regulations will have to be modified periodically to keep pace as new knowledge becomes available about the changes in the domains of concern--the capabilities and performance of the facilities, the characteristics of the residents, and the knowledge of the effects of various care processes, techniques, and arrangements on the

INTRODUCTION AND SUMMARY / 25 quality of care and quality of life of nursing home residents. SUMMARY OF RECOMMENDATIONS The committee's recommendations are contained in Chapters 3-7. They deal primarily with regulatory criteria, with the process of inspecting and certifying nursing homes, with the enforcement process, with the ombudsman program, and with issues requiring further study. Regulatory Criteria The following changes in the federal certification criteria are recommended: 1. The regulatory distinctions between SNFs and ICFs should be eliminated. Recommendation 3-1: The regulatory distinction between SNFs and ICFs should be abolished. A single set of conditions of participation and standards should be used to certify all nursing homes. The current SNF conditions and stand ard s, with the mod if ications and ad d itions recommended below, should become the bases for new certifying criteria. The reasons for making this recommendation are set forth in Chapter 3. 2. A new condition of participation on resident assessment is required. This is of fundamental importance because it has broad implications for both regulation and management (see Chapter 3, Resident Assessment). Recommendation 3-2: A new condition of participation on resident assessr'~e''t should be added. It should require that in every certified facility a registered nurse who has received appropriate training for the purpose shall be

26 / NURSING HOME CARE responsible for seeing that accurate assessments of each resident are done upon admission, periodically, and whenever there is a change in resident status. The results should be recorder! and retained in a standard format in the resident's medical record. 2. The existing SNE conditions of participation and standards should be rewritten in accordance with the following principles: · Whenever appropriate, the criteria should address residents' needs and the effects of care on residents, and on the performance of a facility in providing care rather than on its capability to perform. · The criteria should be based on the best professional standards for providing high quality of care and quality of life to nursing home residents. · The criteria should be drafted clearly and with as much specificity as possible so that they can be understood by facilities, applied consistently by surveyors, and be legally enforceable. · The criteria should be internally consistent, logical, and comprehensive. · The criteria should include physical, mental, and social functioning; nursing care; nutritional status; social services; physician care; psychological care; pharmacy; dental care; environment; residents' rights; emotional well-being; personal choice; satisfaction; and community interaction. · The criteria should be sensitive to each facility's case mix--that is, the variations in the services required and outcome expectations for residents with different needs found in one facility. · The criteria should not be unnecessarily burdensome on facilities. Recommendation 3-3: The existing SNF conditions and standards should be rewritten in accordance with the above principles and made applicable to all nursing homes.

INTRODUCTION AND SUMMARY / 27 4. Because quality of life, in addition to quality of care, is particularly important in nursing homes, the committee believes that it should be incorporated as a condition of participation. Recommendation 3-4: A new condition of participation concerning quality of life should be added to the certification regulations. The condition should state that residents shall be cared for in such a manner and in such an environment as will promote maintenance or enhancement of their quality of life without abridging the safety and rights of other residents. 5. There is a need to reorient the approach to regulation of nursing homes to make it more resident-centered and outcome-oriented. This requires a new condition of participation on quality of care. Recommendation 3-5: A new condition of participation on quality of care should be added to the certification regulations. It should state that each resident is to receive high-quality care to meet individual physical, mental, and psychosocial needs. The care should be designed to maintain or improve the residents' physical, mental, and emotional well-being. 6. Residents' rights should be raised from a standard to a condition of participation and some new residents' rights standards should be added. Recon~n~end ation 3-6: The existing stand ard on resid ents' rights should be made into a condition of participation. The condition should state that every resident has certain civil and personal legal rights that must be honored by the staff of the facility. Rights specified in this condition, as they pertain to a resident who has been adjudicated incompetent in accordance with state law, shall devolve to the resident's guardian, or, if required by the state, a responsible party. In cases where the attending physician determines that a legally competent resident is incapable of exercising a right, the

28 / NURSING HOME CARE conditions and circumstances shall be fully documented in the medical record and the right shall devolve to a responsible party. The following standards should be ad d eci to the resid ents' rights cond ition: a. All residents admitted to the facility shall be told that there are legal rights for their protection during their stay at the facility and that these are described in an accompanying written statement. Reasonable arrangements shall be made for those who speak a language other than English. At such time as the rights set forth in this condition are revised, resid ents shall be given the u pd ated in formation. Further explanation of the written statement of rights shall be available to residents and their visitors upon reasonable request to the administrator or other d esignated sta ff person. b. Each resident has the right to know the name, address, and phone number of the state survey office, state or local nursing home ombudsman office, and state or local legal service office. The facility shall post such information in a location accessible to residents and visitors. c. Each resident has a right to see written facility policies. Facilities shall make policies available on request. Facilities shall post state survey reports and plans of correction in a location accessible to residents. d. Each resident may inspect his/her medical and social records upon request to the facility. The resident may request and receive copies of the records at a photocopying cost not exceeding the amount customarily charged in the facility's community for similar services. (This overrides state law and/or regulations if they are in conflict.) e. Each resident r''ust receive prior notice of transfer, discharge, and lapse of bed-hold periods. The facility must notify the resident, resident's representative, and attending physician in writing (IJ at least 3 days prior to the lapse of bed -hold period s, (2J at least 3 days prior to intrafacility transfer,

INTRODUCTION AND SUMMARY / 29 (3) at least 4 days prior to discharge from the facility except as specified in documented emergencies. The notice must contain the reason for the proposed transfer, the effective date, the location to which the facility proposes to transfer the resident, a statement that the resident may contest the proposed action, and the address and telephone number of the state or local nursing home ombudsman. f. Each resident, along with his/her family has the right to organize, maintain, and participate in resid ent ad visory and family councils. Each facility shall provide assistance and space for meetings. Council meetings shall be afforded privacy, with staff or visitors attending only upon the council's invitation. A staff person shall be designated responsible for providing this assistance and for responding to written requests that result from council meetings. Resident and family councils shall be encouraged to make recommendations regarding facility . · ~ policies. g. Each resident has the right to meet with visitors and participate in social, religious, and political activities at their discretion so long as the activities do not infringe on the rights of other residents. This includes the right to join others within and outside the facility to work for improvement in long-term care. The facility must permit each resident to receive visitors and associate freely inside or outside of the facility with persons and groups on the resident's own initiative. Visitors must be granted access to residents. The residents, however, have the right to refuse or terminate any visit. 7. Seven of the current conditions of participation-- governing body and management, utilization review, transfer agreement, disaster preparedness, medical direction, laboratory and radiological services, and medical records--should be consolidated into one new condition to be called "administration." New standards should be added on nurse's aide training, access, Medicaid discrimination, notification, and consumer participation.

30 / NURSING HO3lE CARE Recommendation 3-7: A new condition of participation entitled "Administration" should be established. The following current cond itions of participation should be reclassified as standards under this new cond ition: governing body and management, utilization review, bans f er agreements, d isaster pre pared ness, med ical direction, laboratory and radiological services, and medical records. Recommendation 3-7A: The current requirements for institutional planning and submission of quarterly staffing reports should be eliminated in drafting the new administration condition. Recommend ation 3-7B: A new stand arc, nurse's aid e training, should be added to the administration condition. The standard should require that all nurse's aides complete a preservice state-approved training program in a state-accredited institution such as a community college. Recommendation 3-7C: A new standard should be written under the administration condition that prohibits facilities that have signed a Medicaid Provider Agreement f rom having d ifferent stand ard s of ad mission, bans fer, discharge, and service for individuals on the basis of sources of payment. Recommendation 3-7D: When the governing body and management condition is rewritten and incorporated in the new administration condition, the current standard "j" should be changed to require the facility to record at admission and periodically confirm or update the identity of a guardian, conservator, or resident's representative to be notified in the event of (1J care conferences; (2J changes in the resident's physical, mental, or emotional status; (3J an accident involving the resident; (4J change in billing; (SJ change of room; (6J discharge from the facility; or (7J changes in federal or state residents' rights. Notification should be timely.

INTRODUCTION AND SUMMARY / 31 Recommendation 3-7E: the administration condition that would require every facility to clevelop and implement a plan for regular resident participation in decision-making in the facility's operations and policies and for presentation of resident concerns. Forms of resident participation can include, but are not limited to, resident councils, regularly sched uled resid ent f orums, resid ent issue or program committees, and grievance committees. Facilities should include existing resident councils and/or other resident representatives in developing this plan. A new stand ard should be ad d ed to Recommendation 3-7F. Two new elements should be added to the governing body and management standard as follows: a. Certified nursing homes should be required to permit access to the homes by an ombudsman (whether volunteer or paidJ who has been certified by the state. With permission of a resident or legal guardian, a certified ombudsman should be allowed to examine the resident's records maintained by the nursing home. b. Any authorized employee or agent of a public agency, or any authorized representative of a community legal services organization, or any authorized n~en~ber of a nonprofit community support agency that provides health or social services to nursing home residents should be permitted access at reasonable hours to any ind ivid ual resid ent o f any nursing home. 8. Standards in the social services and physical environment conditions should be strengthened. Recommendation 3-8: Standard 5, "Other Environmental Considerations" in the Physical Environment Condition currently reads ". . . provision is made for adequate and comfortable lighting levels in all areas, limitation of sounds at comfort levels, maintaining a comfortable room temperature ...." It should be amended to add, at this point, "that is within acceptable ranges of operative temperature and humidity for persons clothed in typical summer or winter clothing at light, mainly sedentary activities, as specified in the ANSI-ASHRAE Standard

32 / NURSING HOME CARE 55-1981." This is the stand ard prescribed by the nationally recognized American National Standards Institute. Waivers may be granted for existing facilities until such time as substantial renovation takes place. Recommendation 3-9: The present social service condition should be changed to require that each facility with 100 beds or more be required to employ at least one full-time social worker. Qualifications for this position should be a bachelor's degree in social work, a master's degree in social work, or some equivalent degree in an applied human service field at the bachelor's level or higher as approved by the state. Facilities with fewer than 100 beds or those in rural areas that have made a good-faith effort and have been unable to recruit a qualifies! social worker with the required credentials may substitute a contractual arrangement with a community agency or with an independent social work consultant. However, the HCFA should establish a minimum level of effort for social services in exempted facilities--for example, one day of consultation per week. Monitoring Nursing Home Performance The following recommendations are made to strengthen the process of determining the extent to which nursing homes are complying with the conditions of participation: 1. Medicare and Medicaid survey and certification requirements should be consolidated. Recommend ation 4-1: Med. icare and Med. icaid survey and certification process requirements should be consolidated in one place i'' the Code of Federal Regulations to promote consistency. 2. The timing of surveys should be adjusted to make them less predictable. Recon'n~endation 4-2: The tinting of surveys should maximize the element of surprise; the standard annual survey should

INTRODUCTION AND SUMMARY / 33 be conducted somewhere between 9 and 15 months after the previous annual survey, with the average across all facilities within each state remaining at 12 months. Additional standard! surveys also should! take place whenever there are key events, such as a change in ownership. Independent of the survey cycle, all facilities should be required to pass rigorous life safety code and food inspections at regular intervals. 3. The following two survey instruments and protocols based on the new conditions and standards should be developed: a. a standard, relatively short survey, that would be resident-centered and use key outcome indicators to determine quality of care, and b. an extended survey that would entail a comprehensive examination of the nursing home's operations. The extended survey would be used if the standard survey findings indicated that there were--or might be--evidence of inadequacies in the quality of care being provided to some or all of the residents. Good nursing homes would normally experience only the standard survey. Recommendation 4-3: Two new survey protocols should be clesigned and testeal to implement the new conditions and stand arcls recommend ed in Cha pier 3: a stand ard survey anc! an extencled survey. Both must be based on the revised conditions of participation and standards. 4. The standard survey process would entail an audit of the resident assessment data maintained by the facility and would rely on a case-mix-referenced sample of residents to gather the information required by the standard survey instrument. The extended survey would enlarge the sample of residents examined and increase the comprehensiveness of the standard protocol to look at compliance with all elements of all standards. It would further document poor resident outcomes and explore the extent to which structural and process factors may have contributed to these outcomes.

34 / NURSING HOME CARE Recommendation 4-4: Both standard and extended surveys should assess samples of residents stratified by standard case-mix categories. Case-mix definitions, and the procedures and sample sizes requires! to attain a prespecifiect level of precision, should be established by the HCFA. Recommendation 4-5: The standard survey should rely on "key ind icators" of quality of resid ent life and care that would be prescribed by the HCFA. These key indicators would measure poor resident outcomes and other resident and facility conditions that might be causes! by noncompliance with the federal conditions and standards and should be investigated further by the survey agency. Recon~n~endation 4-6: Facilities that perform poorly on key indicators of quality of resident care or life should be subjected to a full or partial extended survey, depending on the range of problem areas discovered. The purpose of the extended survey is to determine the extent to which the facility is responsible for the poor outcomes due to noncompliance with the federal cond itions and standards. Recommendation 4-7: Quality assessment in the survey process should rely heavily on interviews with, and observation of, residents and staff, and only secondarily on "paper compliance,"such as chart reviews, official policies and procedures manuals, and other indirect measures of actual care given and resident outcomes. 5. The survey process should be coordinated with the complaint-handling process, and the latter would be strengthened. Recon~n~encintion 4-8. The HCFA should require states to have a specific procedure and sufficient staff to properly investigate complaints. 6. The survey process should formally seek information directly from consumers (residents and their advocates).

INTRODUCTION AND SUMMARY / 3 5 Recommendation 4-9: The HCFA should incorporate in its survey operations manual the following ad d itional procedures to be followed by surveyors in addition to interviews with those residents sampled for the survey protocols: · At the beginning of the survey, surveyors should meet briefly with members of the facility's resident council or with a group of willing and capable residents to elicit general information about services and resident satisfaction as well as to identify any areas of particular concern. · Resident representatives should participate in the part of the exit conference where deficiencies are cited and the plan of correction is discussed. · At the close of the survey, the following notice should be posted in a location accessible to residents and visitors: The (state survey agency) completed its regular certification survey of {facility name) on Mated. Anyone wishing to provide add itional information may contact the (state survey agency ~ before (date (ad d ress ) (~hone ) i 7. Positive incentives for good performance should be ncorporated into the survey and certification process. Recon~n~endation 4-10: In addition to exempting good facilities front extended surveys, ways should be explored to commend su perior performance. 8. The HCFA should require the state agencies to implement a program to develop and support consistent and reliable surveys. Recommendation 4-11: The new survey protocols, including the forms, procedures, and guidelines used by surveyors, should be designed in accordance with the revised and

36 / NURSING HOME CARE amended conditions and standards recommended in Chapter 3, and they should be revised as the conditions and stand ard s are changed in the f uture. Recomr''enc/tation 4-12: All survey protocols (instruments and procedures) should be tested so that they are capable of yielding reliable and consistent results when used by properly trained surveyors anywhere. Recommenclation 4-13. A sample of facilities shouicl be sub ject to an extend ed survey each year. In formation f rom this sample should be uses! to validate and improve the standard survey. Recommendation 4-14: The HCFA should require the state agencies to implement a program to develop and support consistent and reliable surveys. This program should be based on effective training and monitoring of surveyor performance to reduce inconsistency. 9. Several steps should be taken to strengthen the regulatory capacity of the states: · Full federal funding should be provided for state survey and certification activities. State surveyor qualifications should be strengthened. · Both federal and state surveyor training efforts should be increased. · The results of research and evaluation studies should be analyzed and disseminated by the HCFA. Recommendation 4-15: Title XIX of the Social Security Act should be amendect to authorize 100 percent federal funding of costs of the nursing home survey and certification activities of the states. This authority should be extender! for 3 years, after which time a federal-state matching ratio should be reestablished. The HCFA should clevelop a standard! formula for distributing funds to the states uncler this authority so that each state is funded on an equal basis in proportion to its federal certification workload.

INTRODUCTION AND SUMMARY / 37 Recommendation 4-16: The HCFA should revise its guidelines to make them more specific about the qualifications of surveyors and the composition and numbers of survey team staff necessary to conduct adequate resident-centered, outcome-orientec/t inspections of nursing homes. As a minimum, every survey team should include at least one nurse. For use on extencled surveys, the survey agency should have specialists on staff (or, in small states, as consultantsJ in the disciplinary areas covered! by the conditions and standards (for example, pharmacy, nutrition, social services, and activitiesJ. Recommenclation 4-17: Fed eral training e fforts and su pport of state-level training programs should be increasecl, especially during the period of transition to the new survey process, and cluring the implementation of the new resident assessment cond ition of participation. Recommendation 4-18: National data about survey operations and results, and from any experiments and demonstrations sponsored by the HCFA or the states, should be collected, analyzed, and disseminated by the federal government to facilitate continued improvement in survey methods. 10. Federal oversight capabilities vis-a-vis state survey operations should be strengthened and the HCFA should be given authority to withhold a portion of Medicaid matching funds from states that perform the survey and certification function inadequately. Recommendation 4-19: The HCFA should increase its capabilities to oversee state survey and certification of nursing homes and to enforce federal requirements on states as well as facilities by · adding enough additional federal surveyors to each regional office to ensure that the random sample of nursing hones surveyed each year in each state is large enough to allow reasonable inferences about the adequacy of the state's survey anc/t certification activities;

38 / NURSING HOME CARE · scheduling "look-behind" surveys so that valid comparisons can be made of the findings of fecleral anc/t state surveys; and · amending Title XIX of the Social Security Act to authorize the HCFA to withhold a portion of Meclicaid matching funds from states that perform inadequately in their survey and certification of nursing homes. 11. Inspection of care should be integrated with the certification survey. Recon~n~end ation 4-20: The ins pection-o f -care f unction should be carried out as part of the new resident-centered, outcome-orientec! survey process. But ind ivid ual resid ent reviews should be required for a sample of residents (private-pay as well as Meclicaid) rather than for all relic/tents (although individual states may elect to continue 100 percent reviews). 12. A realignment of federal and state certification role relationships vis-a-vis Medicare and state-owned facilities is necessary. Recommendation 4-21: The respective roles and responsibilities of the federal and state governments should be realigned as follows. · The states should be responsible for certifying all Medicare and Medicaid facilities (except state institutionsJ according to federal requirements. · The NCFA should monitor state performance more actively and be responsible for conducting surveys of, and certifying, state-owned institutions directly. Enforcing Compliance with Federal Standards The following improvements in enforcement are recommended: 1. The HCFA should revise its guidelines for the post-survey enforcement process.

INTRODUCTION AND SUMMARY / 39 Recomn~enciation 5-1. The HCFA should revise its guidelines for the post-survey process. Revisions should includ e · specifying that survey agency personnel not be used as consultants to providers with compliance problems; · specifying how to evaluate plans of correction and what constitutes an acceptable plan of correction; · specifying the circumstances under which onsite followup visits may be waived; · s peel f ying circumstances und er which f ormal enforcement action should be initiated, and how actions should be taken; anc/t ~ requiring that states have formal enforcement procedures and mechanisms. 2. The Medicaid authority should be amended to authorize a set of intermediate sanctions for use by the states and the federal government. Recommendation 5-2: The Medicaic! authority should be amender! to authorize a specifies' set of intermediate sanctions for use by states and by the federal government in enforcing compliance with nursing home conditions of participation and standards. The HCFA should then develop and issue detailed regulations and guiclelines to be followed by the states and by the HCFA in using these sanctions. The sanctions should include · ban on aa missions, civil fines, . . . receivership, · emergency authority to close facilities and bans fer resid ents. 3. The Medicaid statute should be amended to authorize sanctions for use against chronic or repeat violators of certification regulations. Recommendation 5-3: The bIeclicaid statute should be amended to provide authority to impose sanctions on chronic or repeat violators of certification regulations.

40 / NURSING HO3lE CARE The HCFA shouIc' clevelop detailed procedures to be followed by the states to deal with such facilities. Procedures should include, but not be limited to, · the authority to impose more severe sanctions. · a requirement to consider a provider's previous record before certifying or recertifying, and · the responsibility to obtain satisfactory assurances prior to recertifying, that the deficiencies that led to a termination will not recur. 4. The Medicaid statute should be amended to strengthen the effectiveness of sanctions. Recommendation 5-4: The Meclicaici statute should be amended to make the appeals process on sanctions, particularly Recertification, less permissive. The [ICFA should issue regulations anc! guidelines to implement this new authority. 5. The HCFA should strengthen state enforcement capabilities. Recommendation 5-5: The HCFA should strengthen state en forcement ca pabilities by ~ requiring states to commit adequate resources to enforcement activities, including legal and other enforcement-related staff; ~ requiring survey anc/t certification survey agency staffs to incIncle enforcement-related specialists, such as lawyers, auditors, and investigators, to work as part of special survey teams for problem situations and to help support enforcement decision-n~aking; · including more training in investigatory techniques, witness preparation, and the legal syster'' in the basic surveyor training course; and ~ providing federal training support for state survey agency and welfare agency attorneys in nursing home enforcement matters.

! INTRODUCTION AND SUMMARY / 41 Other Factors Affecting Quality of Care and Quality of Life in Nursing Homes The following means to enhance the effectiveness of consumers and consumer advocates in quality assurance are recommended: 1. The HCFA should require states to make public all nursing home inspection and cost reports. Recommendation 6-1: The HCFA should require states to make public all nursing home inspection and cost reports. These documents shouic! be required to be reaclily accessible at nominal cost to consumers and consumer advocates, including state and local ombudsmen. 2. The ombudsman program should be strengthened by amending the Older Americans Act. Recommendation 6-2: The Older Americans Act should be amended to: · establish the ombudsman program under a se parate title in the Act; · increase funds for state programs by authorizing federal-state matching formula grants for state ombudsman programs. The formula should provide each state with a minimum annual budget in the range of $100,000 fl985 clollarsJ plus an additional amount based on the number of elderly residents in the state. The federal-state matching ratio should be two-thirds federal to one-third state funds. (Although the committee did not study in any depth the budget requirement, this minimum amount is intended to provide the ombudsman program with, for example, the capability to support, at a minimum, a full-time professional and secretary and sufficient travel and training funds to recruit, train, and certify volunteers as local ombudsmen.) · establish a statutory National Advisory Council composed of state on~budsn~en, state and local aging agencies, provider and consumer representatives, state regulators, health care professionals (physicians, nurses,

42 / NURSING HOME CARE administrators, social workers;, and members of the general public to advise on administration, training, program priorities, development, research, and evaluation; · authorize state-certified substate and local ombudsmen, including trained, unpaid volunteers, access to nursing homes and, with the permission of the resident, to a resident's medical and social records; · authorize public legal representation for ombudsman programs; exempt the ombudsman programs, including substate ombudsmen who are supported by funds from the state ombudsman program, from the antilobbying provisions of OMB Circular A-122. 3. The Secretary of HHS should direct the Administration on Aging (AoA) to take steps to provide effective national leadership for the Ombudsman Program. Recommendation 6-3: The Secretary of HHS should direct the Administration on Aging (AoAJ to take steps to provide effective national leadership for the Ombudsman Program. At a minimum the Commissioner of AoA should designate a senior f till-time professional and some sit Sporting sta ff to assume responsibility for administering the program. Priority should be given to establishing a national resource center for the program that would develop, in consultation with state programs, an information clearinghouse, training and other materials to assist states, and guidance to states on data collection and analysis. The center should advise on establishing program priorities, and sponsor research and evaluation studies. 4. The HCFA should require state long-term care regulatory agencies to develop written agreements with state ombudsman programs covering information-sharing, training, and case referral. Recommendation 6-4: The HCFA shouic! require state long-term-care regulatory agencies to develop written agreements with state ombudsman programs covering information-sharing, training, and case referral.

INTRODUCTION AND SUMMARY / 43 Issues Requiring Further Study Information Systems HHS should undertake a study to design a system for acquiring and using resident assessment data. A study also should be initiated to determine what other data about nursing homes are needed for regulatory, policy development, and other public purposes. Recommendation 7-1: The Secretary of NHS should ord er a study to design a system for acquiring and using resident assessment data to meet the legitimate and continuing needs of state and federal government agencies. The Secretary also should orcler a study to determine the needs for other data about nursing homes that would facilitate regulation and policy clevelopment. This study should recommend specific ways to collect, analyze, and publish or otherwise retake such data publicly available. pried icaid Payment Policies Further study is needed to determine optimal Medicaid payment policies. Nursing Home Bed Su p ply The policy on controlling the supply of nursing home beds is related to the issue of developing a broader array of interrelated long-term-care services. This, in turn hinges on the development of more appropriate private and public financing arrangements and policies. The federal government should undertake a systematic study of these interrelated issues to facilitate development of appropriate policies in these areas. If the committee's major recommendations are carried out there may be some effect on the number of currently certified nursing homes that will continue to participate in the Medicaid program. It is likely that poorly managed marginal or substandard facilities will be forced either

44 / NURSING HO3lE CARE to improve their performance or go out of business. Most of those that go out of business are likely to be sold to other owners that will install more competent management and staff and continue in operation. It is possible, however, that some facilities may elect to withdraw from participation in the Medicaid program. There is no way of determining beforehand to what extent, if any, this is likely to occur. Or, if it does occur to a significant extent, whether states will respond by easing their restrictions on expansion of bed supply only for certified homes, or by making licensure contingent on participation in the Medicaid program. Sta f f ing o f Nursing Homes Based on the availability of systematic resident assessment data, two kinds of staffing studies should be undertaken: (1) studies to develop a minimum staffing algorithm relating staffing to case mix, and (2) studies on staff qualifications. Single- Versus ~lultiple-Occu pancy Rooms The HCFA should commission a study of the costs and benefits of single-occupancy rooms compared to multiple-occupancy rooms in nursing homes. Recommendation 7-2: The HCFA should commission a stucly of the costs anc! benefits of single-occupancy rooms compared to multiple-occupancy rooms in nursing homes. The study should be designed to obtain data about the effects of single rooms on the quality of life of various types of nursing home residents. It should be completed within 2 years after it has been authorized. It should contain recommendations for the desired proportions of single- and multiple-occupancy rooms in nursing homes. It also shouic! recommend required proportions in future new construction anc! ma for reflood cling of existing build ings.

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As more people live longer, the need for quality long-term care for the elderly will increase dramatically. This volume examines the current system of nursing home regulations, and proposes an overhaul to better provide for those confined to such facilities. It determines the need for regulations, and concludes that the present regulatory system is inadequate, stating that what is needed is not more regulation, but better regulation. This long-anticipated study provides a wealth of useful background information, in-depth study, and discussion for nursing home administrators, students, and teachers in the health care field; professionals involved in caring for the elderly; and geriatric specialists.

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