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Home and Community Care of the Elderly: Framing the Issues Robert L. Kane hi,] [hen ~ was invited to this conference, its name was Care of me Sick ~ ~ Elderly. It has since been changed to Care of Me Elderly Patient, a sign that we recognize the increasing difficulty of distinguishing between the sick and the weD elderly. Many remarks during the cOurse of the forum win be directed toward Hat very difficult distinction. My task is to frame some of the issues surrounding care of me elderly, and ~ shall begin by laying out some basic pnnciples. First, we shall look at the problem of changes in severity of care that people receive resulting from changes within the acute care system. Second, we shalD look at distinctions between the site of care and Me type of care. Third, we shad examine me need for linkages, or what Dr. Donabedian resend to as coordination, between He acute care system and the chronic care system. We need to recognize that we are looking at `'care careers" of people over the course of a whole lifetime. We shall approach some of the distinctions between the form of care and He way mat form has been shaped by He way that we pay for care; we will discuss He distinctions between who performs these services and what is done; and finally, we shah look at some of the issues around quality. CHANGES IN SEVERITY OF CARE Let us look at some of the causes for He changes in severity of care. We have heard a great deal In recent years about He effects of ~ See Avedis Donabedian, "Qu~li~ of Care and the Health Needs of the Elderly Panent," in this volume. 16

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HOME AND COMMUNITY CARE: ISSUES 17 imposing prospective payment in the hospital. We hear frequent accusa- tions about discharging people quicker and sicker. We must recognize, however, that documenting the shifts in some of these areas is relatively difficult. For example, the literature reveals conflicting data about admis- sions into nursing homes (12,15~. It is not clear whether Were is a differ- ence in the rate of change among characteristics of the people admitted to nursing homes today as a result of the introduction of this new payment system in the hospitals. We are also seeing a tremendous growth in the development of new technologies in acute care that has aBowed us to change the nature of the survival rates of people treated in that system and thus, potentially, to change the nature of the people who move from incidence into prevalence(4~. One of Me topics increasingly debated today is whether there exists a compression of morbidity in a segment of the population, particularly the middle aged and young elderly, who have benefited from our improved abilities to treat illness (l,3,9,13,16~. Is the aging popula- tion more impaired or less impaired than it has been in previous years? In other words, we have a great de e] of conflicting information about whether the prevalence of morbid conditions among the elderly is declining or Increasing. We are also seeing some impressive changes In demography regard- ing, first, increased likelihood of survival Qife expectancy among the elderly is increasing), and second, the effects, particularly We projected effects, of changes in bird cohorts (with more persons in We older age groups). Another factor to be considered is changing mores. It is reflected In part by me change in the title of this forum. What do we now define as disability? Our Shoed for defining disability has changed over timer l 0~. For example, the standard measures for defining disability have changed for people applying for benefits and early retirement through Social Security. Because these measures have not been consistent, but have been very much socially and politically detennined, we cannot make valid comparisons or extrapolate to see whether one is seeing true differences over the years or simply measurement differences. SITES AND TYPES OF CARE To confound the problem we are beginning to see a fascinating blurnng between the site of care and the type of care. If one looks at He

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18 ROBERT L. KANE quality-of-care literature of just a few years ago, one finds statements about how care ought to be deliver. Profound and unambiguous pro- nouncements were made about the Might way" to treat a particular condi- tion. Often the patient was put in bed for an extended length of time in a hospital and required intensive supervision. Many of the these very same patients are ww being managed on an ambulatory basis or troth home care. We are seeing a transfer into the community of very sophisticated home care in which people are maintained on expensive and elaborate machinery mat formerly required Me constant attention of highly quali- fied technical personnel, carefully supervised within an institution. It is much harder to make judgments about the nature of that care. We are also seeing Me distinction between acute and long-tenn care begin to blur more and more. We are recognizing mat one leads to me other and that it is very difficult to ten where acute care ends and long- term care begins. In many cases it depends on whom you ask. If you ask the people in long-term care, they say that it begins as soon as the patient is admitted to the hospital. People delivering acute care say that long- te~m care begins as soon as we want to get rid of the patient. The distinction has become increasingly apiary and, as we win see, it is Unven by external factors other than professional judgment. We have used a term in the past about location of care In Me home, and we have distinguished among different levels of medical practitio- ners, but many of the distinctions in community care revolve around whether care is delivered in a home nursing model or a homemaking model. Much supportive care depends on the kind of organization that provides that care, the kinds of professional sponsorship, and often, the kind of fiscal sponsorshipwho is paying and what are the enters of elig~bili~. We certainly see distinctions between various modalities of community care. Some current research has Lied to distinguish the relative efficacy, for example, of methods of home care versus day care. Another important question relates to transportationis it more efficient to transport caregivers to the home or to passport patients to some kind of a central facility? When one examines the relative efficacy of different kinds of care, one really must look at Me ramifications of the total-care delivery pack- age, not just a part of it. We need to Wink about the kind of care that we want to provide in terms of availability of that care. Much care in the community is available only five days a week and only at certain times of the day. For example, it may be more efficacious to provide care for

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HOME AND COMMUNTl.Y CARE: ISSUES 19 people with Alzheimer's disease at night than during me day. We have not yet begun to address how to develop the kinds of attendant systems that provide care when it is needed rawer than when it is made available. Certainly, we have observed, even from very general national-level data, enormous variations across We country in me availability and consequent use of different forms of care. In addition' a great deal of substitution occurs of-one kind of care for another when a certain kind of care is not available. Rehabilitation is one area in which variations are most pro- nounced, particularly now mat it is exempt under Medicare. LINKAGES BETWEEN ACUTE AND CHRONIC CARE Let us look at some of the linkages between the acute and chronic care. Dr. Donabedian has already aBuded to He importance of hospital discharge planrung. The hospital is a major launching point for the long- tenn care careers of many patients. Currently there is enormous variation in the degrees to which important care decisions are made, in the ways Cat they are made, and in the persons participating in the decisions. Dr. Donabedian has addressed at length He importance of patient autonomy in decision making for discharge. Not too long ago, one heard national authorities state Hat a good hospital discharge plan was one in which the patient knew where he or she was going. We have not come too far from that point in many circumstances. Very few places have both the leisure and the willingness to engage in careful decision making with aD He participants regarding this very critical question. Very few hospitals in this country can permit patients to sample some of the alternatives available. Even fewer places have alter- natives available at the particular time when one wants to make that discharge. We are really asking patient~if we, indeed, are even able to involve them in the decision making to make critical decisions, which may affect He rest of their lives, on the basis of very fragonenta~y infor- mation. In m-any cases, none of the pardes critical to the decision making know much about He alternatives that they are discussing. Sometimes, He hospital personnel have never visited He nursing homes, have no idea of He real competence of He home health agencies, and talk in vague generalities about places about which they have no personal experience. In some of the worst cases, the staff knows from personal experience Hat they would not put Heir own mothers in a particular home, but they are

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20 ROBERT L. KANE under pressure to move the patients out in a hurry and therefore coerce or encourage patients, or in some cases simply ship them to inferior facili- ties. Another reason hospitals have not given the needed attention to discharge planning is that under the current system of hospital reimburse- ment, there are strong counter-pressures to spending time planning dis- charges. The costs must be absorbed by We hospital even Cough the time spent win affect care once the patient leaves the hospital. GERIATRIC ASSESSMENT We have raised the '~white knight" of geriatric assessment as a tech- nology to counter the problems associated with some discharges. Indeed, some of He experiences win Germanic assessment suggest that a carefid, organized look at patient character~shcs looking at a broad range of functional abilities, making careful diagnoses Cat may detect previously undetected, but treatable problems, and looking at the social and physical environment might produce a discharge plan that has profound positive consequences for subsequent functioning; in some cases it may even, in a relatively short penod, save money from subsequent hospitalizations and avoid nursing home care (14~. As one looks at the field of genatoc assessment more carefully, one has to dissect the cntical elements of the assessment process to find how it might become more affordable (2~. Geriatric assessment units begin with a belief that something better can be done for the patient, almost the total antithesis of most discharge planning. Indeed, the literature on geriatric assessment shows Cat one can produce very positive effects with a wide variety of inputs Aid. One does not need a multidisciplinary team on the order of Noah's Ark to do geriatric assessment. One can even do it with a single person a nurse or a social workerand produce virtually the same outcomes as with more elaborate teams. What seems to be needed is attention, a positive attitude, and an ability to convey optimism to other careg~vers In the system. A specific area for more research on this technology is the study of what aspects of geriatric assessment make the difference for Be patient. Is it systematically collecting information? Is it providing Cat information to appropn ate people? Is it the sense of optimism, or does it really require a mutually supportive group therapy session for care pro- viders?

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HOME AND COMMUNITY CARE: ISSUES 21 ALTERNATIVE MODES OF CARE An area that has presented great problems for distinguishing between acute and chronic care In the community has been the domination in research during the last decade of the so-called "alternatives mentality" (5~. We have probably lost a great deal of impetus for good research into me technology of community care by Winking of community care as an alternative to the nursing home, rather Han looking at the values of community care as a primary objective. We have set up a paradigm in a disadvantageous waydisadvantageous because, among other things, if one starts with a community-based population, relatively few of those people are likely to enter a nursing home. So you have a natural ceiling on your potential benefitpreventing nursing home admissions. We have spent much time and money looking at that question and generally have concluded ~at, indeed, community care does not necessanly prevent admission to nursing homes. But we have not addressed more fundamental questions such as, Is community care a legitimate and important vehicle for providing care on an ongoing basis? If one asks patients, families, and providers, few win vote in favor of nursing homes over community care. Yet somehow we Wink that the only value of community care is that it prevents nursing home care. It may be disadvantageous to the whole field to believe that, not only because it raises a question unlikely to be answered positively, but because it distracts attention from the nursing home to the community. Both the nursing home and the community are important, legitimate sources for providing care for the chronically iU elderly. Indeed, we should spend more effort on improving nursing home care rather than striving to do away with it. If we can move away from this "alternatives" paradigm, we may begin to pursue better quality care in nursing homes, a legitimate activity on its own, rawer than viewing it as a failure of community care. Care Coordination One of the frustrating things for me has been the failure of the health care community to recognize that in the area of chronic disease we are Eking about careers of care, not episodes of care. We have aBowed the way we think about care to be defined by the way that we pay for it. We

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22 ROBERT L. KANE have even set up our statistics to reflect this distinction. We collect a great deal of data on hospital discharges, nursing home admissions, and nursing home discharges. The only problem is that they are aU wrong. People do not usually get discharged from nursing homes. Most are discharged only temporarily. If they do not die, they go to the hospital and then they come back to the nursing home (1 I). The hospital is really just a visit; it is not a discharge (and ~ do not mean short stays where you hold beds). We need to find out what happens to people at the interface between the acute and the long-term care system. We need to find new ways to look at this problem and set up our data bases very differently. We need longitudinal records that indicate the success of an intervention over a period of time, not that simply record when a patient goes in and out a door. We have also been guilty of this event fixation in the acute care hospital and in the doctor's office. We continue it as we move into chronic care. We are using models that worked poorly, but relatively adequately in circumscribed areas, and- we are trying to apply them to chronic care. Chronicity lasts a long time. This is the heart of its definition, and yet we treat chronic care as if it were a variant of acute care. We have set up information systems around mistaken ideas that reinforce the wrong stere- otypes. We need to recognize that we are looking at a series of changes in location of an individual who is going through a series of life transitions. The hospital is a critical point of departure for most of the long-term care careers in this county, but we also need to look at the expected outcomes of nursing home care. Very few studies in the literature trace people over a period of years after they move out of nursing homes. Where do they end up? Is the discharge successful if you simply move the person out of a nursing home? Again, driven largely by the funding system, we have developed a new set of terminologies that we can transitional care or post-acute care, in which patients go somewhere after discharge from the hospital (7~. We are beginning to explore this area to see whether venous modalities of dischargeto home care, to skilled nursing facilities, or to rehabilita- tionproduce different outcomes. Does it make a difference where the patient goes? Can we understand how those differences relate to what occurred earlier during the period of hospitalization? If we are going to produce a rational program for chronic disease, if we are going to develop data bases that will support the practice of geriatric care in all of its

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HOME AND COMMUNTIY CARE: ISSUES 23 branches, then we must begin to shift our thinking so that we can influ- ence policymakers to think in terms of investments. The paradigm of geriatrics invests much energy and effort up front in doing a better job of evaluating, assessing, and determining the needs of elderly patients, with the expectation that this investment wig pay off by producing better outcomes and even by saving costs over time. The more we constrain the payout penod for that investment, the narrower our outlook, and the less likely we are to recoup that investment. QUALITY OF CARE The most striking question in long-term care is the lack of concor- dance between what we do and what happens. Given the difficulties of correlating process and outcome, it makes more sense to me to look at what happens to a patient rather than to debate orthodoxies of treatment. We have spent much energy in the area of chronic care developing measures of the "nght way" to do these things. We would be better served by developing a system that recognizes a variety of possible outcomes, even if the outcomes are measured In relatively short units of time. Such a system might be integrated appropriately into a payment system that could then provide positive incentives for caregivers to achieve positive outcomes. To accomplish this, we would need a system that did not necessarily require a positive outcome, but rather an outcome that was in the realm of expected outcomes (assessed by comparing the actual outcome with the expected outcome). A good outcome is one that is as good or better than what would reasonably be expected for a patient with those particular kinds of conditions (61. In this way, we can shift our attention from a system that deempha- sizes function to one that defines outcomes in a wide variety of parame- ters including physical, cognitive, psychological, and social functioning. In addition, it would encourage the development of environments condu- cive to those kinds of function, and it would provide a series of reinforcers for the kinds of results that we were thing to achieve. We would, of course, think carefully about developing appropriate units of scale and data sets for these measurements that would allow us to measure changes in functional tempts.

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24 ROBERTA. LIE RESEARCH OPPORTUNITIES IN TECHNOLOGIES This brings us to research opportunities for the deliverer of care for He chronically id. We are on the verge of a very exciting technological breakthrough. These are essentially "low technologies" compared with nuclear magnetic imagers and the like, but nevertheless, they are very important; they are in the area of information. These technologies win provide structure and reinforcement to many of the workers in the long- term care system including nursing aides and homemake~who tend to come from the lower educational strata In society. As we provide information support to care providers that will allow them to make better decisions and to have a better understanding of He changes occulting along the relevant parameters, we have something that is very exciting. Bar Code Readers In Minnesota, we are beginning to introduce a bar code reader, about the size of a credit card. hnagine a nursing home or a home care agency in which each patient, instead of having He traditional ID bracelet, has a bar code. The caregivers would wear a similar bar code on their name tags, so that each caregiver and patient is identified. By using some very basic technology, information can be collected about when care was delivered to which patients; you can set up bar codes for entering any information. We have developed a hand-held bar code card that is used for behavioral training in incontinence; you can develop direct reinforcers that record when He patient was toileted. The bar code reader has a clock that gives the time and date, which is recorded when care is delivered. The bar code reader produces a direct readout so that, at He end of each shift, the material is entered into another reader that generates a printout showing exactly what was done in each ward. We have suddenly made available to nursing supervisors an enormous amount of information about who is getting what kind of care, how venous staff members perform, and where there are patients who were scheduled for toileting but did not get toileted. Medication errors within a nursing home can be eliminated by using this kind of very simple, but revolutionary, technology. By using the bar code to compare the patient's identification win the encoded orders, the system can assure that the right drug is given at the right time to the right

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HOME AND COMMUNITY CARE: ISSUES 25 person. Moreover, by recording the caregiver's identity at the same time, it can develop a tamper proof medication record. The bar code reader can be used even more effectively in home care, in which a chief problem is how to monitor off-site care, as Dr. Donabe- dian pointed out. This device provides a very good way of accounting for people's time and the activities Mat they performed. Medical Information Systems The other major breakthrough of note is the development of medical information systems for long-term care. In Minnesota, we have begun working on a laptop computer that can be taken into Me padent's room. It presents an outline for a standardized history and assessment, and struc- tures the type of information collected. It eliminates duplication and redundancy that often occurs when several individuals enter information into the record. A desktop computer can take this information and generate an ongoing printout In both graphic and tabular form that allows one to chart changes over time in patient status. This form of data display can help address one of the most pressing issues in long-term care, namely, the supply of careg~vers. If long-term care is to continue to attract minimum wage workers (even at slightly better minimum wages), the job must become intrinsically more rewarding. An important source of reward is the sense of accomplishing something. By demonstrating the progress of patients, especially when compared with the expected course of similar patients, the information system provides a graphic picture of achievement. Moreover, it encourages Me caregiver to think in terms of change over time instead of static events. Similarly, the structured infor- mation collection and the computerized guide to translating assessed problems into care plans provides a mechanism for directing care, and, hence, it may permit lesser trained individuals to play a more active role in caregiving. Thus, the same philosophy can be easily extended to support Me care given by informal providers as wed. We are beginning to see some tremendous advances in the potential for this kind of information technology. ~ would suggest that major breakthroughs in long-term care win come with the evolution of these kinds of technology. We hope that information technology will change the environment in which people practice, make it more attractive for them, and make them more efficient in providing home and community care.

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26 ROBERT L. KANE REFERENCES 1. Cnmmins, E.M. Evidence on the compression of morbidity. Geron- tolog~ca Perspecta 1:45~9, 1987. 2. Epstein, A.M., Hall, I.A., Besd~ne, R., et al. The emergence of geriat- nc assessment units. Annals of Internal Medicine 106:29~303, 1987. 3. Fries, I.F. The compression of morbidity. Milbank Memonal Fund Quarterly/Health and Society 61:397~19, Summer 1983. 4. Gomez-Mann, O., Folsom, A.R., Kottke, T.E., et al. Improvement in long-tenn survival among patients hospitalized with acute myocardial infarction. New England journal of Medicine 316:135~1359, 1987. Kane, R.A., and Kane, R.~. Long-Tenn Care: Principles, Programs, and Policies. New Yolk, Spnnger, 1987. Kane, Ah., Ben, R., Riegler, S., et al. Predicting the outcomes of nursing-home patients. The Gerontologist 23:20(~206, 1983. 7. Kane, Ah., and Kane, R.A. PosHlospital care: A mystery and an opportunity. In VIadeck, B.C., and Alfano, G.~., eds. Extended Care: Issues, Problems, and Prospects. Owings Mills, Md., Rynd Commu- nications, 1987. 8. Kane, R.~. Beyond caring: The challenge to geriatrics. Journal of He American Geriatrics Society 36:467~72, 1988. 9. Kane, am., Radosevitch, D., and Vaupel, I. Compression of morbid- ity: Issues and irrelevancies. In Kane, R.~., Evans, I. Gnmley, and Macfadyen, D., eds. Brnprov~ng Health in Older People. Oxford, Oxford University Press, in press. 10. Kovar, M.G. Some comments on measuring morbidity. Gerontol- ogica Pespecta I:4~54, 1987. 11. Lewis, M.A., Cretin, S., and Kane, R.~. The natural history of nursing home patients. The Gerontologist 25:382-388, 1985. 12. Lewis, M.A., Leake, B., Leal-Sotelo, M., and Clark, V. The initial effects of the prospective payment system on nursing home patients. AmericaniournalofPublicHealth77:81~82l, 1987. 13. Manton, K.G. Past and future life expectancy increases at later ages: Their implications for the linkage of chronic morbidity, disability, end mortality. loumalofGerontology41:672~81, 1986. 14. Rubenstein, L.Z., Josephson, K.R., Wieland, G.D., et al. Effective-

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HOME AND COMMUNITY CARE: ISSUES 27 ness of a geriatric evaluation unit: A randomized clinical trial. New England Joumal of Medicine 31I:166~1670' 1984. 15. Sager' M.A., Leventhal, E.A., and Easterling, D.V. The impact of Medicare's prospective payment system on Wisconsin nursing homes. Journal of the American Medical Association 257:1762-1766, 1987. 16. Verbn~gge, L.M. Longer life but worsening health? Trends in health and morality of mid~e-aged and older persons. Milbar~c Memorial Fund Quarterly/Heal~ and Society 62:475-519, 1984. r . , .