APPENDIX B

Separate Dissenting Opinions

Seven members of the Committee have provided dissenting opinions regarding specific aspects of the final report.

DISSENT REGARDING RECOMMENDATION 3.1 AND RELATED ISSUES THAT SHOULD HAVE GREATER EMPHASIS

Rosalie A. Kane, Joshua Wiener, Janet E. George, Laurie E. Powers, Arthur Y. Webb, Penny H. Feldman, and Keren Brown Wilson disagreed with the wording of Recommendation 3.1, and offered the following explanation of their differences with the recommendation and the supporting text:

The recommendations and the content of the Report reflect a serious effort to grapple with the complex issues in defining and assuring quality of long-term care across a variety of service sites and target populations. We endorse all of the report's recommendations, but think that Recommendation 3.1 does not go far enough. Further, the report as a whole, fails to convey a coherent strategy and sense of direction justified by review of all the evidence presented to the committee.

Several important points were minimized or omitted from the Report. These points are briefly stated below to provide a backdrop for our concerns about Recommendation 3.1, in particular and also our discussion of regulations. References supporting these views are included:

  1. Quality of life, as perceived by the long-term-care consumer (or, when



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Improving the Quality of Long-Term Care APPENDIX B Separate Dissenting Opinions Seven members of the Committee have provided dissenting opinions regarding specific aspects of the final report. DISSENT REGARDING RECOMMENDATION 3.1 AND RELATED ISSUES THAT SHOULD HAVE GREATER EMPHASIS Rosalie A. Kane, Joshua Wiener, Janet E. George, Laurie E. Powers, Arthur Y. Webb, Penny H. Feldman, and Keren Brown Wilson disagreed with the wording of Recommendation 3.1, and offered the following explanation of their differences with the recommendation and the supporting text: The recommendations and the content of the Report reflect a serious effort to grapple with the complex issues in defining and assuring quality of long-term care across a variety of service sites and target populations. We endorse all of the report's recommendations, but think that Recommendation 3.1 does not go far enough. Further, the report as a whole, fails to convey a coherent strategy and sense of direction justified by review of all the evidence presented to the committee. Several important points were minimized or omitted from the Report. These points are briefly stated below to provide a backdrop for our concerns about Recommendation 3.1, in particular and also our discussion of regulations. References supporting these views are included: Quality of life, as perceived by the long-term-care consumer (or, when

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Improving the Quality of Long-Term Care appropriate his or her agent) is an essential part of the quality of longterm care. Quality of life includes outcomes such as consumer choice and autonomy, dignity, individuality, comfort, meaningful activity, meaningful relationships, sense of security, and spiritual well-being (Noelker and Harel, 2000). As the report indicates, Health Care Financing Administration is currently funding a major effort to develop and test measures and indicators of such quality of life outcomes. Other researchers have also had considerable success in developing consumer self-report measures of quality of life, including persons with considerable cognitive impairment (Brod et al., 1999; Logsdon et al., 1999; Uman, 1995). Although long-term-care providers cannot be fully responsible for quality of life outcomes (which are also a function of health and disability status, family composition, and personality), long-term-care programs and settings can act to enhance or to retard these quality of life outcomes. The current regulatory system was not designed with quality of life issues as the focus. If quality of life is seen as a legitimate goal of long-term care, the consumer's view of quality may sometimes involve conditions and circumstances that professionals view as a threat to health or safety. This tradeoff and the possibility that consumers might knowingly assume risks in order to maximize other benefits were not expressed in the final version of the report, yet it is an important reality (Kapp 1999; Kapp and Wilson, 1995; Kane and Caplan, 1993; Clemens et al., 1994). Even though there have been relatively few discussions or studies of how consumers and providers relate to these tradeoffs, the tradeoffs are widely recognized to occur routinely across all settings (Degenholtz et al., 1997). Consumer-centered care (including consumer-directed care) is extensively discussed in the report. Consumer-centered care calls for the consumer (or his or her agent) to be involved to the extent desired and practical in all goal-setting and planning for care and to have direct input into the evaluation of his or her care. Consumer-directed care is a term sometimes reserved for situations where consumers are completely responsible for hiring, training, supervising, and evaluating the care that they receive. The report mistakenly described consumer-centered care as largely applicable to personal assistant services received by people under age 65. In fact, such principles are widely applicable to and have increasingly been applied to older people receiving care in a variety of settings. The report marginalizes “consumer-centered care,” stating that it is not for all people. This, we believe, is a misunderstanding of the concept. The principle of consulting consumer preferences directly or through their

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Improving the Quality of Long-Term Care agents has widespread applicability to people of all ages, and in all settings including nursing homes. It has been applied to people with cognitive impairment including Alzheimer's disease and developmental disability. The emergence of new models of care, including client-directed home care and assisted living, is a direct result of consumer choice about how they want to live while needing care. The version of consumer-directed care that entails cash payments to consumers who are then responsible for purchasing and monitoring their own care, is merely one manifestation of consumer-centered and consumer-directed care. This level of consumer direction is inapplicable to some consumers because of their preferences, capabilities or level of social support. Consumer-centered care can be seen on a continuum, with consumer direction of various kinds at one end of the continuum. Throughout the long-term-care system in all types of settings, consumer-centered and consumer-directed care is insufficiently available. Although the lack of a consumer-centered focus in long-term care is mentioned in the report, it is under-stated and plays out in the recommendations as a concept that needs study before implementation rather than implementation with accompanying research. In our view, the evidence gathered for this Report already supports the value of and need for consumer centered care. Recommendation 3.1 Recommendation 3.1 states: The Committee recommends that the Department of Health and Human Services, with input from state and private organizations, develop and fund a research agenda to investigate the potential quality impact associated with access to, and limitations of, different models of consumer-centered long-term-care services, including consumer directed services. A research agenda is certainly appropriate and welcome but in our view insufficient to address the lack of consumer-centered approaches in the current long-term-care system. The need for greater access to a broader array of services and reconfiguration of long-term-care services so they better address consumer preferences is well-established. Research is not needed to establish the desirability of that goal, one that is already the focus of much state policy. Research is needed to examine barriers to access and barriers to consumer-centered care. We, therefore, endorse language that calls for state governments to work with providers and consumers to design and make available in each state an array of community-based long-term-care options for individuals of all ages with long-term-care needs and for individual consumers to be afforded the opportunity to specify the degree of control and influence that they are able to or wish to assume over the direction of their care.

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Improving the Quality of Long-Term Care We dissent from the narrow research-only nature of recommendation 3.1, and maintain that the recommendation should also have included an action step because the evidence presented in the report and other evidence presented to the Committee, clearly shows that long-term-care consumers today do not have appropriate choices. Many receive care in forms and circumstances that do not comport with their preferences. Chapter 2 presents extensive information about the lack of access to an array of services. A research agenda about whether it is appropriate to center long-term care on consumer preferences is a pale response to an obvious goal. A research focused recommendation conveys a view that consumer-centered care might be unsafe or imprudent care that would not meet quality standards. In our view, the care cannot by definition meet quality standards if it is inconsistent with or interferes with what makes life worthwhile to the consumer. Those who object to implementing an array of options and endorsing consumer-centered care as a policy raise the point that many older people who need care have cognitive impairment and may not even have an agent willing or able to be a proxy decision-maker. We concur that people with substantial cognitive impairment who also have no family agent acting on their behalf cannot direct their care in the sense of hiring, training, supervising, and firing staff. But not all consumer-centered care is consumer-directed care—that is, care where the consumer or his or her agent, directly control all care details. The general concept of determining and to the extent possible enabling consumer preferences is applicable, even for people with cognitive impairment. Moreover, consumer-centered care, in the sense of care that conforms as much as possible to consumer's preferences, is also possible and desirable in nursing homes and a wide variety of residential settings (Gamroth et al., 1995). Both consumer-centered care and the consumer-directed variant have been applied to and on behalf of people with severe developmental disabilities accompanied by cognitive impairment with good results and cost savings (Nerney and Shumway, 1996). Work is already underway to determine the extent to which the concept can be applied for community-dwelling persons with Alzheimer's disease (Robert Wood Johnson Foundation, 1995). There is nothing in the concept of consumer-centered care that is antithetical to care of high technical quality, nor anything that would impose the burden of organizing their own care on people without the capability or desire to do so. We endorse the research aspect of Recommendation 3.1. However, such research should be oriented towards demonstrating and overcoming obstacles to consumer-centered care and demonstrating models by which consumer preferences and feedback can be elicited and applied in a variety of settings. Research is also needed to test approaches that en-

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Improving the Quality of Long-Term Care able consumers to live at home or in settings with little nursing oversight while still receiving help with medications and other services that in many states require a registered nurse. For example, a recent study done by the University of Washington School of Nursing, under a mandate from the state legislature, examined the effect of permitting registered nurses to delegate nursing functions to nonlicensed and noncertified workers. The study documented excellent outcomes; lower costs, more leadership of nurses in community long-term-care settings and no untoward events (Young and Sikma, 1998). Research of this nature advances consumer-centered care and is necessary to identify the best approaches to deliver such care. In addition, research, evaluation and demonstration efforts are needed to provide practical information to consumers and decision-makers and to broaden the understanding of what consumer-centered care entails. Consumer-centered and consumer-directed care encourages consumers to make choices among types of care settings and on details of care within a particular setting. Adequate information is necessary to make such choices. Such information must be available to consumers in easily understood terms. Consumer-centered care means also that providers cede some decision-making to consumers and that consumers be permitted to make tradeoffs that they consider important in choosing a care setting or provider and the details of a care plan. The idea that a single “appropriate” setting exists for each consumer based on disability level must give way to an understanding that more than one choice can work for many consumers. This requires a philosophical change for providers, care managers, regulators, and consumer advocates, such as nursing home ombudsmen, all of whom should receive training in the philosophy of consumer-centered care. Provider-centered care is so ingrained in long-term-care programs that a concerted effort is needed to identify and explore the biases that many professionals bring to planning and allocating long-term-care services. In conclusion, we reiterate that we respect the deep deliberation conducted by the Committee and agree with the intentions of the report and its recommendations. We also reiterate that we are not dissenting from the report itself except for the formulation of Recommendation 3.1. Otherwise, the main point of this separate opinion is to highlight some issues and give greater emphasis to the salience of consumer-centered approaches. We are grateful for that opportunity. Concerns Regarding Regulatory Issues Rosalie A. Kane, Janet E. George, Laurie E. Powers, Arthur Y. Webb,

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Improving the Quality of Long-Term Care and Keren Brown Wilson additionally expressed dissatisfaction with the report's discussion of regulatory issues. Their viewpoint on these issues is expressed below. Recommendation 5.2 “recommends that state agencies along with the private sector develop programs to disseminate information to consumers (a) on the various types of long-term-care settings available to them, and (b) where applicable information on the compliance with relevant state standards of individual long-term-care providers.” Recommendation 5.3 states: . . . “all states have appropriate standard-setting and oversight mechanisms for all settings where people receive personal care and nursing services. The committee recognizes that before this recommendation can be implemented, research examining the effectiveness of the state survey and enforcement activities for residential care be undertaken.” Taken together, these recommendations contain many important concepts with which we agree. However, the report gives insufficient recognition to the complexity of standard-setting and monitoring of alternative settings, given the diversity of models within and across states. Further, standards are in flux, and new methods of regulatory oversight are under development. Therefore, while supporting the recommendations, we offer several observations about their relationship to consumer-centered care. Consumer understanding of the options available to them is a critical requirement in the implementation of consumer-centered care. Especially in residential care, terminology tends to be confusing and states have many different licensed entities with a variety of regulatory mandates and prohibitions. At a minimum, state bodies should make these definitions transparent to the public and publicize them widely. Recommendation 5.2 supports this point. In addition, we urge states to reexamine the standards. Some standards serve merely to delimit the amount of care that may be given or the disability levels of people that may be served in a particular setting. Standard-setting should include review of standards that pertain to building and equipment, to staff and program, and to consumers who may be admitted or retained. The point is to ensure an appropriate standard setting process and effective oversight mechanisms. The recommendation and the discussion supporting it, however, do not discuss the complexities, difficulties, and tradeoffs in standard setting for home and community-based services, or suggest that consumers be part of the standard setting and oversight processes. The quality of residential care, including assisted living, is uneven. Some residential care settings offer neither homelike settings with a likelihood of a better quality of life nor a service capacity to meet the needs of

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Improving the Quality of Long-Term Care people with higher levels of frailty. Further, we recognize the scandals that have occasionally erupted over problems in assisted living, and endorse strong state enforcement to curb such abuses. Beyond identifying indisputably poor care, however, little agreement has been reached on desired standards for various types of residential care. Assisted Living providers have combined with advocacy organizations including the American Association of retired Persons and the Alzheimer 's Association to discuss draft standards for assisted living (ALQC, 1998). Great diversity exists among states in the current regulatory expectations, and many experts believe that some states have standards that are too minimal in terms of expectations for aging in place and for private accommodations. Some states use regulations more to limit the kind of care that may be offered and the people who may be admitted or retained rather than to specify care outcome expectations. Recommendation 5.3 recognizes these issues and responds by calling for research on the effectiveness of state survey and enforcement activities. We would have preferred that the recommendation specify who should undertake the activity. Further, some prior effort to develop a national classification system and typology including considerable conceptual work on what effectiveness means in this context is necessary before a survey could yield useful information. Without clarity on a number of definitions, studies could do more harm than good by adding to confusion, and perhaps cutting off meaningful options to consumers. Despite the uncertainties of assisted living and the diversity across states, significant numbers of consumers who are functionally eligible for nursing homes are selecting assisted living. Medicare and/or Medicaid waiver coverage for assisted living is now available in at least 30 states. Washington, New Jersey, Texas, and Oregon have shown that apartment style assisted living can be provided for moderate-income people with heavy long-term-care needs. It is therefore important that efforts be undertaken to develop and implement appropriate classifications and standards for enforcement. In conclusion, we reiterate that we respect the Committee's deliberations and agree with the intentions of the report and the majority of its recommendations. Our dissent is limited to Recommendation 3.1. Otherwise, this separate opinion highlights some issues and gives greater emphasis to the salience of consumer-centered approaches than is reflected in the report. We are grateful for that opportunity. REFERENCES ALQC, Assisted Living Quality Coalition Report. Washington, D.C.: National Association for Retired Persons, 1998.

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Improving the Quality of Long-Term Care Albert, S, Catillo-Castaneda, C., Sano, M., Jacobs, D, Marder, K. Bell, K, Blysma, F., Lafleche, G, Brandt, J., Albert, M., and Stern, Y. Quality of Life in Patient's With Alzheimer's Disease as Reported by Patient Proxies. Journal of the American Geriatrics Society, 44:1342–1347. Brod, M., Stewart, A.L., Sands, L. and Walton, P. Conceptualization and measurement of quality of life in dementia: The Dementia Quality of Life Instrument (DqoL). The Gerontologist, 39 (1), 25–35. Clemens, E., Wetle, T., Feltes, M., Crabtree, B., and Dubitzky, D. Contradictions in case management: Client-centered theory and directive practice with frail elderly. Journal of Aging and Health, 6:70–88, 1994. Degenholtz, H.D., Kane, R.A. and Kivnick, H.Q. Care-Related Preferences and Values of Elderly Community Based Long-Term-Care Consumers: Can Case Managers Learn What's Important to Clients? The Gerontologist, 37:767–776, 1997. Gamroth, L.M., Semradek, J., and Tornquist, E.M. (eds). Enhancing Autonomy in Long-Term Care: Concepts and Strategies. New York: Springer Publishing Company, 1995. Kane R.A. and Caplan, A.L. Ethical Conflict in the Management of Home Care: The Case Manager's Dilemma, New York: Springer Publishing Company, 1993. Kapp, M.B. Quality of Care and Quality of Life in Nursing Facilities: What's Regulation Got to Do with It? McGeorge Law Review, 31(3):707–731. Kapp, M.B. Who Is Responsible for This? Assigning Rights and Consequences in Elder Care. Journal of Aging and Social Policy, 9(2):51–65, 1997. Kapp, M.B. and Wilson, K.B. Assisted Living and Negotiated Risk: Reconciling Protection and Autonomy . Journal of Ethics, Law and Aging, 1 (1):5–13, 1995. Lawton, M.P., Van Haitsma, K., and Klapper J. Observed Affect in Nursing Home Residents with Alzheimer's disease. Journal of Gerontology, 51B:3–14, 1996. Logsdon, R., Gibbons, L., McCurry, S. and Teri, L. Quality of Life in Alzheimer's Disease: Patient and Caregiver Reports. Journal of Mental Health and Aging. 5 (1):21–32, 1999. Mattimore, T.J., Wenger, N.S., Desbiens, N.A., Teno, J.M., Hamel, M.B., Lit, H., Califf, R., Connors, A.F., Lynn, J., and Oye, R.K. Surrogate and Physician's Understanding of Patient's Preferences for Living Permanently in a Nursing Home. Journal of the American Geriatrics Society, 45 (7):818–824, 1997. Nerney, T. and Shumway, D. Beyond Managed Care: Self-Determination for People With Disabilities , Concord, NH: University of New Hampshire Institute on Disabilities, 1996. Noelker L.S. and Harel, Z. (eds). Quality of Life and Quality of Care in Long-Term Care. New York: Springer Publishing Company, 2000. Rabins, P., Kasper, J., Kleinman, L., Black, B. and Patrick, D. Concepts and Methods in the Development of the ADRLQ: An Instrument for Assessing Health-Related Quality of Life with Alzheimer's Disease . Journal of Mental Health and Aging, 5(1):33–49. Robert Wood Johnson Foundation. Independent Choices: Enhancing Consume-Direction for People With Disabilities : Washington, D.C., The Brookings Institute. Uman, G (1995). Measuring Consumer Satisfaction in Nursing Homes: A Small Business Innovation Research (SBIR) Grant Study, Paper presented at the Annual Meeting of the Gerontological Society of America, November 4, 1995. Available from Gwen Uman, Vital Research, 8380 Melrose Avenue, # 309, Los Angeles, CA.) Young, H.M. and Sikma, S.K. The Evaluation of the Implementation of Nurse Delegation in Washington State: Final Report. Prepared by University of Washington School of Nursing for the Aging and Adult Services Administration, Washington State Department of Social and Health Services, November 1998. Wilson, K.B. Assisted Living: Reconceptualizing Regulation to Meet Consumers' Needs and Preferences. Washington, D.C.: American Association of Retired Persons, 1996.