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BOOK REVIEW |
27 Lodge Road West Newton, MA 02465-1214
Culture Change in Long-Term Care, edited by Audrey S. Weiner and Judah L. Ronch. Haworth Social Work Practice Press, Binghamton, NY, 2003, 449 pp., $69.95 (cloth), $39.95 (paper).
The Not So Golden Years: Caregiving, the Frail Elderly, and the Long-Term Care Establishment, by Laura Katz Olson. Rowman & Littlefield Publishers, Inc., Lanham, MD, 2003, 299 pp., $75.00 (cloth), $29.95 (paper).
Women in the Middle: Their Parent Care Years, by Elaine Brody. Springer Publishing Company, New York, 2004, 400 pp., $49.95 (cloth).
Each book in this set examines a particular subsystem of the larger society—family, organization, and political economy—as it intersects with issues of long-term care. Each subsystem, of course, is made up of individual human beings, some of whom are occupying roles within all three entities. Further, the subsystems themselves are intertwined with daily social and financial transactions. Nevertheless, each subsystem operates on its own separate ontological plane with unique values, relationships, and standards for judging what is good. Maximizing the interests of any single subsystem, for instance, may not be in the interest of the others. Respect for autonomy of an older person, for example, may not carry the same weight in the family, the nursing home, or policy chamber. An organization's survival needs will trump benevolence, and enlightened long-term care policy will yield to the interests of provider lobbies. For some reason, these observations of mine sent me to the library in search of Reinhold Niebuhr's (1960) book Moral Man and Immoral Society, written in the depths of the Great Depression, which argued that moral precepts that guide the behavior of individuals do not apply necessarily to higher levels of social organization. I will connect his perspective to the books reviewed in this essay after I have discussed them more directly.
Women and Caregiving
Women continue to be in the middle when it comes to parent care, according to Elaine Brody in the second edition of her path-breaking book, Women in the Middle: Their Parent Care Years. While acknowledging the contribution of sons for parent care (and in the case of spouses, husbands), she demonstrates with overwhelming evidence that parent and elder care is primarily the domain of women. More specifically, she disaggregates the various kinds of care tasks, and shows how different subpopulations of women (married daughters, daughters without partners, daughters-in-law, and wives) tackle them.
This second edition is dedicated to Stanley J. (Steve) Brody, her colleague, mentor, and late husband whom she credits for encouraging her to pursue her professional career and whose influence continues. Readers of the first edition will find more than 150 new references on long-term care policy and research incorporated into the various chapters of this volume. Happily, they will also find continuity with citations from the works of early leaders in this field: Sidney Katz, M. Powell Lawton, Irving Rosow, Ethel Shanas, Gordon Streib, Vern Bengtson, Barry Lebowitz, and, of course, Brody herself. New readers, perhaps only familiar with the latest long-term care research, will discover that our progress in elucidating long-term caretaking stands on the shoulders, if not of giants, at least of scholars of intellect and vision.
This book has been enhanced conceptually, organizationally, and with respect to data compared to the first edition, which was published in 1990. In addition to the 150 new references noted, there are two new chapters, written by Avalie Saperstein, on "Racial and Ethnic Diversity" and "Some Developments in Community Services and Residential Settings." Both chapters are current and informative.
The book is organized into five sections composed of 18 chapters. Part I provides an overview that includes both early work on conceptualizing long-term caretaking and the latest data on the issue from the U.S. Department of Health and Human Services (DHHS), AARP (formerly the American Association of Retired Persons), the U.S. Administration on Aging (AOA), and other agencies and research enterprises. It describes the effects of caregiving on women along the dimensions of emotional, physical, and financial strain. The section concludes with a chapter on values that demonstrates both the continuity of women's willingness to care for elders and the dilemma of sorting out which responsibilities reside with family and which with government.
Part II focuses on women's subjective experiences of caregiving "based on thousands of clinical interviews and also on long, verbatim tape-recorded accounts of the caregivers' journeys by the women themselves" (p. 87). It is here that I found the book to be conceptually enhanced by Brody's focus on the circumstances under which a woman becomes a primary caregiver. Chapter 6, titled "On Becoming the Primary Caregiver: Caregiving Daughters and Their Siblings," includes most of chapters 6, 7, and 8 of the first edition. By organizing this material under the notion of "becoming," however, she allows us to see that the caregiving role is not just a function of family structure and relationships but also of contingency. This should make one wary of packaged explanations of caregiving based on social or psychological theories. In a chapter on subjective themes of caretaking, the judicious use of quotes from the caretakers themselves impresses on the reader the feelings of a woman becoming and realizing that she is to be the caretaker and all that means for her future life opportunities.
Part III, "Diversity Among Caregivers," disaggregates the various types of women caregivers and relies heavily on quotes and case studies from the research noted above to illustrate the reality of their caregiving experiences. The respondents' tales of anger, pain, and loss should quickly dissuade anyone from believing a romanticized notion about caregiving being solely the expression of love or the expression of reciprocal obligation. Caregiving is real hard work and often not a choice but an outcome of circumstance. Women are entitled to their resentment but, as Brody notes, "We should not forget the admirable qualities many women exhibit that enable them to deal with their situations. We see some of them in a different light when we observe their humor, resourcefulness, creativity, and generosity" (p. 253). The section concludes with Saperstein's chapter on racial and ethnic diversity where she discusses both service disparities and cultural differences.
Part IV sensitively and sensibly discusses the issue of nursing home placement and the very personal decisions involved but doesn't duck real problems of financial exploitation and poor quality. (See the discussion of Laura Olson's book below for an exposition of these issues.) It also lays out current progress in bringing about community care and residential options.
Part V concludes the book listing unfinished agenda items in research, policy, and practice. Brody's detailing of specific issues and policies provides plenty of fodder for future endeavors. Her observations and suggestions are written with the passion of a woman who has listened to and heard the voices of caretakers. In the current social atmosphere of dumping more and more responsibilities on individuals and families, she challenges us with the question, "When does the public's expectation of filial responsibility mean the abdication of social responsibility?" (p. 344)
Brody's book is essential reading for academics, policy makers, students, and informed readers who wish to understand long-term caretaking at both the conceptual and ground level.
Organizational Culture in Long-Term Care
Culture Change in Long-Term Care offers a comprehensive overview of an important dimension of long-term care services, namely, the influence of organizational culture on the provision of such services. This is not a book about cultural competence or of understanding cultural minorities, although there is some mention of each. Rather, the volume focuses on organizational culture—the norms, beliefs, practices, and reward systems that tend to be common among organizations that offer long-term care services, particularly nursing homes. Individual workers at all levels, regardless of their educational qualifications, are socialized into this organizational culture and then behave accordingly. The culture, rather than the particular actors, produces the organizational outcomes that may run contrary to the values of dignity and autonomy. This volume lays out concepts, models and experiences designed to change this culture in order to produce a more humanistic environment.
The editors, Audrey Weiner, president and CEO of the Jewish Home and Hospital Lifecare System in New York, and Judah Ronch, founder and executive clinical director of LifeSpan Development Systems, have the backgrounds and experience to comprehend the many facets of organizational culture. This is evidenced in both the scheme of the book and the selection of chapter authors. The work is organized into six sections and 30 articles. Each article has a useful introductory summary.
The first section includes nine articles introducing the ideas of culture in long-term care. Bruce Vladeck leads off by citing his well-known work Unloving Care: The Nursing Home Tragedy (Vladeck, 1980), noting that the lack of consensus on the role of nursing homes he identified 24 years ago continues. Until consensus is reached, he concludes, culture change toward a more humanistic model will evade us. Donald Gibson and Sigal Barsade, both professors of management, follow with a well-argued and well-researched paper on organizational theory applied to long-term care. They make a case that organizational change, while extremely complex, can be managed and is not just a resultant of blind social forces. Ronch, in a later article, spells out an eight-stage process for instituting major change based on the work of one J. Kotter. This process is designed as a way to map what needs to be done, and to provide some inspiration to proceed but doesn't guarantee success. Don Redfoot documents the effect of changing demographics as it translates itself into consumer power as a force for culture change, while Sheldon Tobin lays out the history of humanistic change efforts drawing upon both research and his own personal experiences. Laura Martin and Bette Bonder author the sole chapter dealing with cultural competence, and Carol Levine discusses the role of families. Charles Fahey draws on his years as a gerontologist in an essay that exposits a big-picture framework for achieving change. The final chapter, by Rose Marie Fagan, describes a national grass roots network of believers, called The Pioneer Network, who, in their normal employment in the field of aging, work to bring about positive change. In a sense, it is a model of change and may have fit better in Section 2.
Section 2 is the place to go to find definitive descriptions of well-known models of change in residential care of older persons. Each article is authored by either the founder or an implementer of the model. William Thomas, the founder of the Eden Alternative, for example, describes the program and its evolution into the Green House model. The other models presented in separate articles are: Wellspring, Live Oak Regenerative Community, peer mentoring of nursing home certified nursing assistants (CNAs), and new approaches to Alzheimer patients. While informative, this section might have benefited from an introductory overview by the editors. I would have liked to see a word table comparing the models across some standard characteristics.
Sections 3, 4, and 5 can be conceived of as a single section of implementation case studies divided into three parts: detailed case studies, brief case studies, and international case studies. They are not written in a prescribed format but reflect the elements the authors considered important in telling their story. This limits the reader's capacity to compare and draw general lessons, but most of the cases are interesting and will ring responsive chords in practitioners who have tried to produce organizational change. A few are enhanced with data tables, diagrams, architectural designs, and appendices to strengthen the presentations. Two of the international cases, Switzerland and Australia, present their adaptations of the Eden Alternative thus expanding our understanding of this model in different cultures.
Section 6 concludes the book with a set of four articles asking if change is realistic. The question is examined from the perspective of accreditation, state oversight, and management practices. It concludes, with caveats, that the answer is yes. Robyn Stone, however, casts a colder eye arguing that many attempts to implement models of change fail the test of fidelity to the original model and end up in a muddle. She proclaims that for the advocates of change to succeed, they must comply with what she considers to be a list of "musts."
This book belongs in all gerontology and health care libraries. It is a comprehensive resource for policy makers, academics, students, and practitioners on a neglected area of study, namely, organizational culture.
Greed, Fraud, and Abuse
The song "Santa Claus Is Coming to Town" is playing on the radio as I type this essay on December 14, 2004. If Laura Katz Olson is correct in her book, The Not so Golden Years: Caregiving, the Frail Elderly, and the Long-Term Care Establishment, Santa is bringing bags of ill-gotten money to nursing homes, home health agencies, physicians, hospitals, and other long-term care providers. And, I believe, she is absolutely correct in this carefully documented broadside against the greed, fraud, and abuse that characterizes our political-economic system of long-term care. To validate her claims, I had only to read the day's Boston Globe which reported that a DHHS survey found that provider errors (medically unnecessary service, inadequate documentation, and improper coding) overlooked by Medicare intermediaries cost about $20 billion in 2003 ("Medicare Errors," 2004). Mark McClellan, head of the Centers for Medicare and Medicaid Services, noted that the survey did not seek to uncover the additional costs of fraud, a much more costly problem than errors, according to Olson. An illustration of the fraud problem appeared in the day's Wall Street Journal that reported that Tenet Healthcare, the object of numerous fraud investigations, is seeking a global settlement with the government (Rundle, 2004). None of these billing claims and fraud problems are new, but rather go back to the very beginning of the Medicare and Medicaid programs in the late 1960s. As these programs grew and continued to offer more opportunity for private investment, the opportunities for greed and fraud grew as well. I was there at the beginning as the Director of the Massachusetts Medicaid program (1969–1972), and saw the fraudulent billing, nonexistent patients, Medicaid mills, bundling and unbundling rates to the providers' advantage, exploitive nursing home real estate deals, split prescriptions, provider excuses, and many other practices that Olson meticulously documents from government and private reports. On the importance of this book, Robert Binstock says it well on the back cover of Olson's volume: "Every student of long-term care should be exposed to her insights and arguments."
The first chapter is an introduction to the social location and political economy of long-term care. It sets the stage for the following chapters by explicating the author's perspective that rests on notions of feminism, structures of domination, and the greed of capitalism, and it gives a brief preview of each chapter.
Chapter 2 describes federal and state long-term care programs, primarily Medicare and Medicaid along with some of the cost and quality problems she discusses later. Chapter 3 focuses on family caregivers where she emphasizes the gender bias in caretaking and covers some of the same material as Brody, but in less depth. By comparing her observations with Brody, however, it is clear that she understands not only political economy, but also family caregiving. Chapter 4 discusses the fate of workers in the long-term care industry. These are the underrepresented, underpaid, and overworked individuals who care for our "loved ones" whose needs and desires are presented in Chapter 5. Fear, lack of autonomy, and neglect are common problems that frail elders endure. Olson argues we can and should do better, but hints at the powerful economic interests blocking progress, which she is soon to discuss. Chapter 6 shows how the situations in Chapters 3, 4, and 5 play out by class, race, and ethnicity.
Chapter 7 is a wholesale indictment of the nursing home industry going back to the time of the almshouse. Olson revisits the early exposés of the industry by way of the U.S. Senate Special Committee on Aging, Mary Mendelson's (1974) Tender Loving Greed: How the Incredibly Lucrative Nursing Home "Industry" is Exploiting America's Old People and Defrauding Us All and Bruce Vladek's (1980) Unloving Care: The Nursing Home Tragedy. She also presents recent findings of poor care, abuse, and profiteering from the Government Accounting Office, state inspections, and newspaper investigations. She concludes that reform efforts proposed by these investigators will fail because the long-term care enterprise is flawed fundamentally by the greed, fraud, and abuse described earlier.
In Chapter 8 she expands her analytical arguments and spares no provider. She exposes the sins of nursing homes, hospitals, home health agencies, physicians, pharmacists, medical suppliers, clinical laboratories, community mental health centers, substance abuse centers, managed care companies, and others. One might try to blunt her argument by citing these examples as extreme cases that would be expected in any human enterprise. But they are too widespread, have been around for nearly 40 years, and have defied solution. Moreover, when these cases are seen against the present milieu of rampant corporate fraud, financial misreporting, and audit companies' complicity in cheating stockholders, the pattern of corporate corruption is evident. Her unrelenting attack on providers' arrogance and special pleading before legislators is completely justified given that the health and long-term care sector receives more support from taxpayers than any other economic sector, including defense expenditures: Medicare ($264 billion), Medicaid ($259 billion), and health-related tax expenditures ($130 billion) for a total of $653 billion, compared to $454 billion for defense (U.S. Bureau of the Census, 2004–2005). In the heavily tax-supported health sector, acclaim for free enterprise and market discipline is nothing but unadulterated rhetoric.
As is customary in books of this type, her concluding chapter recommends necessary changes for humanizing long-term care policy. Wisely, she points to the importance of income protection and income adequacy in retirement, regardless of long-term care needs. She calls for deprivatizing nursing homes, improving the status of care work, and adopting a national commitment to care. Unfortunately, and probably realistically, she is not optimistic about the United States being capable of solving these problems, given its market culture and bias toward the private sector to determine social policy. Some readers may be put off by the feminist, structural oppression, anticapital perspective that knits together her arguments. That would be unwise, however, because the examples of unrestrained greed and brazen corruption she portrays would embarrass even—or, more likely, especially—Adam Smith.
Power Versus Compassion
I began this essay by noting that family, organization, and political economy were three separate planes of social interaction, each with its own requirements independent of its interrelationships. Virtues and behavior considered good at the level of the family are meaningless in the political economy. Compassion, love, caring, emotional pain, or joy have no standing in boardrooms or legislative halls where long-term care policy is determined. The political economy has its own rules, and anyone who hopes to improve life at the level of family or organization better understand that and act by those rules—power not compassion. This is the position of Niebuhr who, responding to the rise of fascism and communism in the 1930s, believed that religious and secular liberals were unconscious of the difference between the morality of individuals and that of larger collectivities. He reaffirmed his thinking in 1960. "As individuals, men believe that they ought to love and serve each other and establish justice between each other. As racial, economic, and national groups they take for themselves, whatever their power can command" (Niebuhr, 1960, p. 9, emphasis added).
The political and economic players have produced a health care system that is extremely expensive as measured as a percent of GNP; inefficient as measured by resources wasted on administration, billing, and marketing; unjust as measured by the number of citizens uninsured; corrupt as documented by valid government and private sector reports; questionable in quality as measured by tens of thousands of unnecessary deaths documented by the Institute of Medicine; and fallible in satisfying the needs of long-term caregivers, as established by the volumes reviewed in this essay. Nonetheless, the system continues to devour resources without improving itself because the political and economic power players continue to benefit. It is the citizens whose work and taxes support the system and who bear its excess costs, morbidity, and mortality. This will continue to be the case until someone can mobilize offsetting political power and convince citizens to act in their own interests and stop listening to the cleverly designed disinformation campaign of private sector solutions, free enterprise, and competitive markets. Who will lead?
References
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