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BOOK REVIEW |
Wynnewood, PA 19096
Improving the Quality of Long-Term Care, edited by Gooloo Wunderlich and Peter O. Kohler. National Academy Press, Washington, DC, 2001, 326 pp., $47.95 (cloth).
Linking Quality of Long-Term Care and Quality of Life, edited by Linda S. Noelker and Zev Harel. Springer Publishing Company, New York, 2001, 274 pp., $49.95 (cloth).
The Law and Older Persons: Is Geriatric Jurisprudence Therapeutic? by Marshall B. Kapp. Carolina Academic Press, Durham, NC, 2003, 223 pp., $28.00 (paper).
The quest for quality of long-term care for the chronically ill and chronically disabled extends back at least to the 18th century. Pinel in France (Zilboorg & Henry, 1941), Chiarugi in Italy (Alexander & Selesnick, 1966), Tuke (Scull, 1981) and Connolly (Deutsch, 1949) in England, and Benjamin Rush and Dorothea Dix in America (Deutsch, 1949) all undertook vigorous campaigns to eliminate restraints, imprisonment, overcrowding, unsanitary living conditions, and outright cruelty visited upon patients and residents in mental hospitals. Dorothea Dix extended the concern to almshouses and county institutions, undoubtedly because these were the destinations for the mentally ill (along with the impoverished and ill elderly, alcoholic, and physically disabled persons in early America; Cohen & Kruschwitz, 1997; Evans & Strumpf, 1989).
More recent efforts in the 20th century followed newspaper exposés, legislative inquiries, and reports of abuse, neglect, and other shortcomings in the scholarly literature (National Citizens Coalition for Nursing Home Reform, 1993, 1995). To a lesser extent, the quest for quality, past and present, has been linked to the quest for more cost-efficient methods that yield both economy and higher quality—efforts that somehow went awry. For example, Kirkbride's 19th century designs for the ideal mental hospital were grounded in notions of efficiency and more humane treatment of the mentally ill (Tomes, 1981). Buildings designed to care for no more than 400 persons were to be constructed with a central portion devoted to administration and male and female wings on either side, with large airy "walking courts" for patients in courtyard areas. This design was later perverted into single buildings housing as many as 1,500–2,000 patients (e.g., the Indiana Central State Hospital for the Insane in Indianapolis). These, in turn, seemed to give license to the construction of ever-larger facilities reaching their acme at Pilgrim State Hospital in New York (13,000 beds; Bleyer, n.d.), Milledgeville State Hospital in Georgia (12,000 beds; Deegan, n.d.), and Manteno State Hospital in Illinois (8,000 beds; Illinois Department of Public Welfare, 1957).
It seems that the course to higher quality has been a jagged one. Some very remarkable steps with unmistakable results were not sustained. The elimination of physical restraints was demonstrated in the 18th, 19th, and 20th centuries when technologies of care and caring were less complex and in some ways less sophisticated. Yet, physical restraint in both general hospitals and long-term care facilities remains a stubborn issue (Cohen & Kruschwitz, 1997).
Benign efforts at one stage have transmogrified into unanticipated forms, often incorporating beneficial improvements and spawning dreadful consequences simultaneously. The community mental health movement beginning in the 1960s and the development of psychotropic drugs coincided and produced the emptying out of America's huge, overcrowded, understaffed, and underfinanced mental hospitals—onto the streets and into America's nursing homes.
Four Stages in the Quest for Quality
These observations about the journeys to achieve quality may reflect no more than changing technologies of medical and social intervention over time, shifts in cultural values, and changing formulations of moral and legal obligations of a given society.
At the risk of oversimplifying the historical quest for quality in the United States, one might divide the journey into four segments. The earliest stage can be traced back to Dorothea Dix, who focused on the almshouse with its undifferentiated population of mentally ill, developmentally disabled, cognitively impaired, severely physically disabled, alcoholic, and economically impoverished persons, as well as whatever else society regarded as its flotsam and jetsam (Deutsch, 1949). In a sense, this was a focus on place, as well as on technique. The second stage, reflected in the provisions of Title I of the Social Security Act also dealt with place, restricting federal assistance to the states for relief of economic poverty to "outdoor" relief, thereby seeking to eliminate the public and eleemosynary institution as economic solutions (Social Security Act, 1972).
The third stage surfaced in the 1950s and 1960s with revelations of overcrowding, poor personal care, horrendous fire hazards, and the absence of effective regulation. This stage came about with increased awareness of a burgeoning population of older Americans, concerns about poverty and human services to resolve health and economic problems, and new medical technologies affecting the treatment modalities for the mentally ill. This stage was characterized by increased emphasis on regulation, largely framed in terms of safety (Cohen, 2003; Kapp, 2003), infusion of substantial resources through Medicaid, and substantial case finding of illness and disability among the elderly population by virtue of Medicare. Oddly, long-term care expressed in terms of home- and community-based interventions as a matter of public policy (publicly endorsed, financed, and regulated programming), and social goals articulated by advocates in the field of aging as expressions of social policy (i.e., generally agreed-upon cultural values) remained in the background.
These first three stages shared a common view of long-term care: a medical model both in terms of the problem to be addressed and the solution to be pursued plus an overriding concern with safety issues. This overly simplistic formulation permitted the development of overly simplistic interventions: improved financing of long-term care and substantially enhanced regulatory systems to detect deficiencies and enforce requirements.
More recently, we entered into a fourth stage that begins to define long-term care for elders in terms of the quality of care (including the quality of caring) and the quality of life. Major concerns addressed included the importance of autonomy and choice for patients and residents, raising, but hardly resolving, issues of surrogate decision making for those cognitively or psychologically impaired, protections of the right to folly, authenticity as an important factor in patient decision making, the utility of advance directives, and other matters. This stage has seen the development of the so-called waiver program favoring home- and community-based interventions over nursing home and other institutional solutions. However, this "advance" has been approached somewhat cautiously, indeed almost tentatively, still regarding the nursing home as the default option or measure against which home- and community-based interventions (particularly in terms of cost implications) should be weighed.
As a result, institutional remedies remain as the substantial option of choice in terms of public funding and "solutions" for serious disability in old age. Remedies addressing quality of care in long-term care facilities continue to rely primarily on enhancing regulation and tinkering with financing mechanisms.
This fourth stage has brought us to the cusp of a new and promising approach. There is growing recognition, if not reflected in practice, that cobbling together the components of long-term care of high quality is a formidable task. It involves assuring comfortable appropriate housing, decent income, and other resources for maintaining some kind of active engagement with family and the larger society, as well as competent, state-of-the-art medical attention, supports to compensate for physical or cognitive deficits, and transportation. This is especially difficult in the face of limited resources of time (i.e., excessively high caseloads), money (individual or jurisdictional caps), trained and competent providers at the clinical and organizational level, and above all, informed planning.
The three books reviewed in this essay serve as a bridge to a broader understanding of the components of quality. As such, all three must be regarded as essential reading or at least required elements of the library on long-term care.
Improving Quality
Each of the books offers a particular perspective of the systematic search for quality long-term care. Improving the Quality of Long-term Care, edited by Gooloo S. Wunderlich and Peter O. Kohler, is the second report to emanate from the Institute of Medicine (IOM) that addresses this issue. The first, published almost 20 years ago (IOM, 1986) was a measured response to exposés, protests, and Congressional inquiries into poor conditions in nursing homes. That report's focus was on remediation through the mechanisms of regulation and enforcement by state and federal agencies. It provided the rationale and detail for major reform of nursing home regulation grounded in the federal Medicaid financing of nursing home care. The reforms were embedded in the Omnibus Budget Reconciliation Act of 1987 (OBRA 87) and elaborated in subsequent regulations issued by the Health Care Financing Administration (HCFA) in 1995. The regulations then required implementation by the states.
In the period between the issuance of the 1986 report and the initiation of the IOM current inquiry, it was generally recognized that much had changed in long-term care. The demographics of the aging population, advances in medical, rehabilitative and restorative technologies, increasing breadth of modalities of long-term care, particularly in home- and community-based services, recognition of the roles of unpaid informal caregivers, the advent of case management, and varying approaches by the several states made clear that some new assessments were called for. It was becoming apparent that issues regarding the "quality of long-term care" were no longer limited to nursing homes. While acknowledging the charge to consider the variety of long-term care settings including those that are home- and community-based, the IOM committee indicated that it examined nursing homes in substantially more depth than other settings "because of the longstanding problems of quality of care in these settings, and because of the paucity of literature on the quality of care in other settings" (p. 4). In addition, it was important to find out what effect OBRA 87 had on nursing home practice and the effectiveness of regulation.
The current report was partially financed by the Robert Wood Johnson Foundation and was prepared at its request. Additional support was provided from the Archstone Foundation, the Irvine Health Foundation, the U.S. Department of Veterans Affairs, and HCFA.
The charge to the IOM committee was broad and directed inquiry into the following:
The report articulated and explicitly recognized three "complementary approaches...used for ensuring quality of care and life in long-term care" (emphasis added):
This recognition of the variety of influences upon quality of long-term care was a radical change. Indeed, it was such a departure from the past and its conventional wisdom regarding regulation and enforcement as the prime movers of improving quality, that its impact was blunted in both the essays that compose the report and the ultimate recommendations emerging from the report. That said, however, the report's recognition of the centrality of consumer "wants, needs, and preferences," the complexity of the concept of quality, and the incorporation of quality of life considerations into the inquiry sets a tone and a direction for the future. The statement of principles guiding the report can and should serve as the starting point for subsequent inquiries.
The report is organized into nine chapters, which provide the background of the report: an introduction defining terms, concepts and definitions, and scope and limitations of the study; "Profile of Long Term Care"; "State of Quality of Long Term Care"; "Information Systems for Monitoring Quality"; "Improving Quality Through External Oversight"; "Strengthening the Caregiving Workforce"; "Building Organizational Capacity"; "Reimbursing to Improve Quality of Care"; and "Closing Remarks."
The executive summary provides a useful listing of 14 recommendations arrayed as follows: Access to Appropriate Services (1); Quality Assurance through External Oversight (5); Strengthening the Workforce (5); Building Organizational Capacity (1); and Reimbursement Issues (2).
However, despite the breadth of the charge to IOM, virtually all recommendations concerned federal or state actions by legislative and administrative bodies. There was not a single recommendation directed at changes within the educational establishment concerning the content and nature of education for physicians, nurses, social workers, physical and occupational therapists, paraprofessional personnel, attorneys, facility and human service administrators, or others. There was not a single recommendation directed at professional associations, trade groups, advocacy organizations, consumer groups or others who are concerned with and develop value and ethical structures of the players in the long-term care arena. There were no recommendations regarding the media and popular notions and understanding about long-term care.
It is as though governmental entities, and only governmental entities, shape the nature and quality of long-term care. Surely this is not the case. Two examples of major reform in American medicine illustrate the point:
Closer to the current issue, one might look to the role of the financial markets in the growth and development of both nursing homes and assisted living facilities, the role of the press in disclosing problems in long-term care, or the role of public interest lawyers and parents' organizations in the major reforms occurring in the developmental disabilities movement.
Notwithstanding the report's limited view of what is to be done, its recognition of the variety of factors to be considered, namely access, external oversight, workforce considerations, organizational capacity, and reimbursement, constitutes a major advance in the efforts around quality that cannot be underestimated and should not be undervalued. This report has paved the way for the detailed inquiries into quality that are just now beginning to be undertaken.
Therapeutic Jurisprudence
One such inquiry is Marshall Kapp's new book, The Law and Older Persons: Is Geriatric Jurisprudence Therapeutic? Kapp's book is useful on three counts. First, by introducing the notion of "therapeutic jurisprudence" to gerontology he offers a basis for considering the arena of state regulation and mandates as an effective intervention in the search not only for quality in long-term care, but also other areas as well, for example, guardianship, death and dying issues, and criminal victimization. Second, he applies outcome analysis to geriatric jurisprudence that goes beyond the surface examination of the "plain meaning of the words," or process changes, and extends to impact on the elderly population as the law may be applied. And third, by directing our attention to the limitations of law and its failure at times to meet the expectations present at the time of its crafting, he forces us to consider other avenues that influence behavior.
Exploring geriatric law is not a process limited to lawyers. Indeed, it may be more important for planners, administrators, regulators, care managers, and clinicians than it is for actors in the legal enterprise. After all, the purpose of law is to confer benefits and protections upon the objects, here older persons, of statutes, regulations, case law holdings, enforcement activities, and other actions and relationships that flow from law. Seen as a therapeutic agent, the law—the rules, procedures, and legal actors—is a social force that can produce therapeutic, antitherapeutic, or inconsequential outcomes.
Kapp's exploration of the concepts of therapeutic jurisprudence that were examined earlier in some detail by Wexler (1990, 1999) and Winnick (1997) is a significant contribution to the quality of care and outcomes research literature in gerontology. Those of us who are ready to suggest changes in law or the legal processes we believe will affirmatively affect long-term care arrangements should be required to read this volume.
Kapp addresses a range of legal involvements that constitute "geriatric jurisprudence" including guardianship issues, research involving older participants, end-of-life concerns, and a general consideration of the old age and victimhood stereotype perhaps present in various areas of law ostensibly protecting the interests of older persons. Approximately half of the volume is devoted to long-term care issues involved in nursing homes, home- and community-based settings, and consumer choice and direction.
Kapp posits the legitimate interests of society in long-term care arising from its exercise of tax and spending powers and the responsibility to use the police power to protect and promote health, welfare and safety of society in general and vulnerable persons in particular. Neither the legitimacy nor intent of the extensive system of "command and control" regulation should be doubted by a therapeutic jurisprudence inquiry. Rather, he suggests, such inquiry
ought to concern how effectively and efficiently current regulatory and litigation strategies are accomplishing their praiseworthy goals...to protect and promote the interest of affected older persons and the larger society in terms of improving older consumers' quality of care and quality of life, compensating injured parties without creating an unjust windfall, maintaining and improving access to needed services, and accomplishing all of the foregoing with a minimum of transaction costs or inefficiencies. (pp. 30–31)
The above is not only a statement of the task Kapp set out to address around long-term care, but is useful in a much more general sense as a model for any inquiry into the therapeutic nature of jurisprudence in the human services.
Kapp's analysis is systematic, well referenced, and thorough. In separate chapters he addresses the general background in nursing homes and home- and community-based long-term care, including the push for intensifying reliance on the latter to meet chronic illness and disability needs. His therapeutic jurisprudence analysis of "command and control" regulation is critical of the persistence of proposals to toughen up the regulatory processes. He suggests that a majority of public policy makers are stuck in what he terms the "analytical box" that says, ‘"If regulation and litigation have failed, the answer is to make more of the same’...What appears to be overlooked," he asserts, is "the actual impact [of regulation] on the quality of care and quality of life for vulnerable older citizens whose well being is a generally overlooked sideshow in this most political of battlegrounds" (p. 67; emphasis added).
In his chapter on home- and community-based long-term care, he addresses the very current issue of regulatory aspects of assisted living facilities as well as regulation of home care. He points, quite properly, at the antitherapeutic hazards that potentially attend major expansion of home- and community-based services (or perhaps more correctly the deinstitutionalization of long-term care for elderly adults), hazards graphically demonstrated by the "enormous human wreckage" resulting from the reduction of mental hospital populations in the 1970s and 1980s. In this connection, he raises a very legitimate question regarding the projected impact of Olmstead v. Zimring (1999), a Supreme Court case that is relied upon by advocates in the independent living movement as requiring interventions for chronic disability to be delivered in home- and community-based settings. Given the devastating impact of mental health de-institutionalization, it is impossible to rule out an analogous outcome in significant elimination of the nursing home option. Thus, it is an issue yet to be subjected to therapeutic jurisprudential analysis.
Kapp has kept his eye carefully focused on outcome analysis. His passionate advocacy for outcome analysis applied to legal interventions is not some kind of anti-regulatory ideological pursuit of "small government" libertarian cant. Nor does he underestimate the complexity or sophistication required for such inquiry. This is not the sole province of lawyers. At its base, it requires interdisciplinary research that is capable of isolating the legal variables from other influences in order to measure their beneficent or maleficent outcomes. How it can come about, and how the political support can be mustered for resources to explore this kind of jurisprudential outcome research is a task for all of us pursuing the quest for quality of care and quality of life for those with chronic illnesses and disabilities.
Quality of Life
Linking Quality of Long-Term Care and Quality of Life, edited by Linda S. Noelker and Zev Harel, represents a major contribution to the substantial growing literature on quality of care and quality of life issues in long-term care. It grows out of the ongoing research into and operation of long-term care programs at Benjamin Rose in Cleveland, Ohio.
This is a rich review of the growing research and commentary on quality of care/quality of life in long-term care for elderly adults. Each chapter deserves careful consideration by planners, administrators, educators, and clinicians concerned with or involved in shaping current and future practice. Perhaps the book's most significant contribution is its effort to explicate the complexity of what "care" and "life" concerns are in the face of chronic illness and chronic disability. The chapters make clear that it is insufficient to do no more than lay out care provider requirements and suggest that meeting those yields high quality of caring and qualities of life. Understanding "quality of life" requires a significantly modified view of what can be accomplished by traditional "command and control" (i.e., regulatory) techniques. Improving everyday life situations in the nursing home and patients' reactions to them requires more than official regulation. This is another avenue into understanding outcomes explored from the jurisprudential perspective by Kapp.
Noelker and Harel's volume is divided into three major sections: "Pivotal Issues," "Quality of Care: Life in Long-Term Care Settings," and "Design and Delivery of Long-Term Care." The opening chapter by the editors, "Humanizing Long-Term Care: Forging a Link Between Quality of Care and Quality of Life," is a first-rate foundation for the discussion of the nature of care, caring, and quality of life that follows. It explicates a variety of theoretical approaches essential to understanding the quality of care and quality of life links for those in long-term care situations. They suggest a fourfold approach in analyzing what is required: environmental requirements, structural requirements, organizational requirements and interpersonal requirements. Although they acknowledge advances in the "conceptualization, measurement, and enforcement of quality of care in nursing homes," these articulations "have not been included in long-term regulatory practice" (p. 22). They conclude quite properly that addressing quality of life issues is essential and must be dealt with by planners, politicians, administrators, academics, professionals, and care recipients.
However, this is more easily said than done. What "programs," that clinicians, managers, and planners can develop and implement to assist in improving quality of life elements is problematical, but the goal is certainly worth striving for. Some of these elements include furthering engagement and contact with friends, family and loved ones, not to mention the larger society; the minute everyday joys associated with entertainments and diversions, "comfort foods," fulfilling leisure time and escapes from boredom; and fundamental freedoms from pain, fear, hunger, inadequate and inappropriate shelter, poor physical care, depression, utter isolation, abject poverty, and overwhelming sense of burden.
Vincent Mor's chapter on regulation and quality of care is a whirlwind tour de force review of the array of assessment tools and devices, and enforcement techniques placed at the disposal of regulatory and accrediting organizations. The comments regarding the dominant Donabedian (1980) model ascribing performance as a function, at least in part, of quality are important to understanding the theoretical underpinnings of our efforts to date in seeking to upgrade quality. Despite the seductive rationality of "objective" data, outcome analysis suggests that doubts about the investment we have made in regulation may be in order—a conclusion more than substantially sustained by Kapp's extended therapeutic jurisprudence analysis. Mor urges us along in the ongoing task of considering quality of life issues systematically, concluding,
the rudimentary tools to begin to ask about quality of life are now present, however inadequately, for the first time.Whether the policy-related applications of the (Minimum Data Set) lexicon actually pervert or amplify the initial clinical intent remains to be seen....This last decade has seen the emergence of myriad opportunities in long-term care assessment and quality monitoring. It may be another decade before we know whether those opportunities will be realized. (p. 65)
It is the second section of the book that is its heart—"Quality of Care: Life in Long-Term Care Settings." Five chapters explore issues of quality in five settings: home care, small residential settings, assisted living, dementia care units, and nursing homes.
Although Powell Lawton's chapter is devoted to dementia care units, it applies to virtually all long-term care residential arrangements. Attempting to summarize its points inevitably oversimplifies Lawton's sophistication, his humanity, and his sensitivity. He suggests that "all definitions of quality of life that do not represent adequately both subjective and objective aspects of quality are deficient" (p. 143). It is his appreciation of both the extensiveness and the limitations of subjective and objective aspects that are so helpful, as well as his observations about the interrelationships between the two. Similarly, he points out that we have tended to ignore the positive subjective states that demented elders can and do experience, building our program plans and quality control systems on avoiding negative subjective states such as distress or pain. While appearing to be subtle distinctions, they may well be fundamental to any advance in understanding quality of life considerations.
The final section of the book presents four chapters concerning change in the culture of nursing homes, improving quality through better practitioner judgments, assessing consumer satisfaction, and special considerations about quality for the isolated elderly.
Wendy Lustbader addresses "radical change" for nursing home culture, and the steps required to achieve such change. Radical change, she asserts, will require a return of locus of control to residents (control of schedules, choices about eating and keeping clean, supporting continence, and promoting self care), enhancing front-line staff's capacity to be responsive, and establishing a home-like environment (significantly enhanced training, involvement of family members in decisions, promoting a sense of community, creating a human habitat, redesigning traditional physical arrangements, and changing relationships with regulators and accreditation inspectors). These are followed by a set of strategies designed to achieve the "radical change."
Without doubt, all of the above would assist in producing change for the better. However necessary they may be, they are, nonetheless, insufficient. They neither address, much less discuss, fundamental issues of the professional decision making that governs much of long-term care daily functioning, the constricted components of market demand (by the older persons and their loved ones), the horrendous problems of maldistribution of long-term care resources, professional personnel, and training capacity, or the operation of capital and financial markets. However, the vision of radical change is important and deserves encouragement. Its limitations notwithstanding, its hope and vision are among the stimulating elements of this volume.
Harel and Georgia Anetzberger in their chapter "Quality of Care and Quality of Life of the Isolated Elderly," offer major contributions to our understanding the meaning of quality of life in or out of long-term care facilities. They derive their analysis from observations of those clearly in need of support, services, and care and without independent resources to satisfy all needs, desires, and preferences. The chapter is an especially important contribution because it recognizes important demographic factors that seem to generate a population of "isolated elders": greater longevity of women who thus outlive their spouses; the heightened mobility of the population in general, resulting in adult children living at some distance from a surviving elderly parent; and the increased incidence of disability and hence diminished local mobility among a population of elderly adults. Isolated older persons offer us a "problem model" to consider. The listing of potential interventions is an excellent starting point for planners, providers, and program administrators.
Looking Ahead
The first step toward a new stage has already been taken: the recognition that high quality long-term care partakes of the quality of care/quality of caring and the quality of life. Though assessing and identifying what contributes to quality of life is admittedly difficult, elusive, and subjective, we have begun to plumb what we now acknowledge is fundamental to high quality long-term care. However, we must be careful to avoid simplistic reductionism and conclusions regarding the constituent elements of quality of life or, for that matter, quality of care.
The great hazard lies in the continuing the search for the silver bullet. Single solutions are false and ought to be avoided. The Noelker and Harel volume is a good start in advancing our appreciation of the complexity of the quest.
Examples of favorite candidates for solutions, either as silver bullets or as the centerpiece of improvement efforts, include the following:
It is too easy to prescribe enhancing autonomy of the patient/resident as a guarantee of quality of life. First of all, autonomy is complex (Collopy, 1988) in its character and consequently in what is required to confer or protect it. Autonomy is sometimes used as a shield for neglect (Childress, 1982; Cohen, 1985). The tools of autonomy are poorly understood, and are reluctantly applied. Barriers are found within professional communities and standards, complexities of family life, economic circumstances, and cultural commonalities. And yet, enhanced autonomy is, without doubt, an essential component of high quality of life.
It was error for Adam Smith (1937) to assume perfect knowledge, the availability of up-to-date information by consumers and providers of products and services, and consistent rational decision making by all parties as the foundation of market behavior. Similarly, it may be error to assume that providing sufficient information to consumers who are able to process the information rationally will result in assessment of all options, and the mustering of enough energy or will to insist on the intervention that will yield the highest quality of care or highest quality of life. And this does not take into account the very large numbers of depressed and/or cognitively impaired elders, much less those with diminished energy.
The process of assessing the life situation of older persons with disabilities can be very complex. The hard part is conveying information to planners, administrators, practitioners, and clinicians—those who affect or control many factors of the life of client—in terms that will ultimately translate into techniques of caring and techniques of creating the hospitable environment that we call quality of care and caring, and quality of life. So much depends upon the life experience perceived by the older person and/or by others. Key informants may be dead, long gone, or absolutely unidentified. Depression, endemic among older persons with disabilities in long-term care settings, may prove to be a high initial hurdle in seeking out what quality of life factors are salient. Cognitive deficits stand in the way of understanding past life. Cultural values long embedded may be shrouded and not revealed through ever "improved" and enlarged minimum data sets.
The three books reviewed in this essay, read expansively as they deserve to be, clearly direct our attention to the complex nature of quality in long-term care. Achieving change as we endeavor to move forward requires another shift in thinking about remedies. I believe we need to focus not only on what constitutes high quality, but also in terms of seeking change; we must better understand how we influence the factors that vitally affect quality of care, caring, and life. Put another way, not only must we identify what conditions we want to change and what outcomes do we seek, but also what behaviors lead to or produce the unwanted conditions, and what techniques can influence such behaviors. In other words, what buttons do we need to push?
I have developed a list of what I would call determinants of quality of care within the long-term context. These are for the most part focused almost entirely upon practice, programmatic components, and program structures. These 10 determinants are as follows: State of the Art, Professional Demand, Cultural Demand, Market Demand, Place, Operational Financing, Capital Financing, Regulation, Sponsorship, and Program Leadership. Some of these are not only well recognized but have achieved silver bullet status at one time or another. But as we have learned, some problems require pushing several buttons at once.
Excessive use of physical and or chemical restraint has been addressed largely through regulation, conditions of public funding, and attempts to marshal public outrage. Oddly, virtually no effort has been addressed to modifying Professional Demand. Yet every patient has a physician, every skilled nursing facility (where restraint might be ordered) has a nursing director, and every patient who is restrained has had an order written by a physician, reviewed by a professional nurse, and carried out under the supervision of nursing staff. If physicians and nurses in pursuit of their professional standards did not believe that restraint was the intervention appropriate to the situation, such restraints would not be applied. Focusing on professional clinical practice that is the genesis of restraint is what should be utilized rather than regulation and financial sanctions that have failed in significant dimension.
Another example: Quality of care and quality of life are functions of Place. The resources of high quality medical oversight, available specialist staff, and qualified professional nurses, physical therapists, social workers, occupational therapists, cooks and others, not to mention agencies with a wide program range are more likely to be available in Boston, Cleveland, and Philadelphia, than, for example, in rural New Mexico, West Virginia's Appalachia, or Little Egypt (in southern Illinois). It is maldistribution of high quality service components and personnel that requires attention and fixing. Neither regulation nor financing will resolve that problem, nor can it be addressed in the short run.
And Place matters at the micro level as well. The best and most generous home- and community-based service will be frustrated by the circumstances of life in the worst of America's slums and housing projects. There are too many neighborhoods in Philadelphia, New York, and Chicago that hold people with disabilities as prisoners because the locations are too dangerous to warrant normal comings and goings of both people with disabilities and those who might provide them with care and service of high quality. Those problems can be solved by helping people move to safe, secure, and pleasant housing and neighborhoods. And what of those with disabilities whose families have moved to distant locations, and who might care for them if they could find a way to move and reestablish a household? Interventions for these problems will not come from improvements in the numbers of hours for home-based care or the removal of reimbursement caps. These require a different kind of policy consideration.
A final example: Like politics, all care is local. Program Leadership, across and beyond just providers, is critical. To the extent that we have found it necessary to "organize" payment systems, delivery mechanisms, and asset availability (e.g., laboratories, hospitals, long-term care facilities, physician practices), we are increasingly reliant upon the effectiveness of organizations, that is, arrangements of personnel, space, and other assets into hierarchically arranged bodies designed to carry out some particular objectives. These include public and private providers, regulators, accrediting groups, third-party payers, professional and trade associations, and educational enterprises. The leadership of such bodies is critical to both the effective definition and accomplishment of the objectives. Perhaps this is what the authors of the IOM (1986) report had in mind in their recommendations regarding improvement in organizational capacity, albeit those recommendations focused on long-term care providers.
The issue addressed by this review essay is broad, sweeping, and burgeoning. How we address quality of care and quality of life in long-term care may be as important as any for gerontologists, requiring that we look well beyond long-term care facilities and home- and community-based programs. The well-being of today's elderly adults may have less to do with any programs advocates in aging have put together and more to do with the GI bill and its associated benefits, or perhaps the housing programs that permitted today's older adults to acquire wealth unprecedented for any generation of elders anywhere in the world. The lesson we should be following is that our quality of life may be the most important element in any long-term care we may require, and we should pursue inquiries to achieve it with greater energy than ever.
References
302 et seq. Repealed P.L. 92-603, Title III, 303(a), (b), Oct. 30, 1972, 86 Stat. 1484.
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