CHARLO'I-TE IKELS
INTRODUCTION H O M E H E A L T H CARE: A N O V E R V I E W O F T H E ISSUES
The papers in this special issue had their origins in a two day conference on "Home Health Care and Elders: International Perspectives" that was held in Cleveland in October 1992 under the auspices of the University Center on Aging and Health of Case Western Reserve University. Funding for the conference was provided by the National Institute on Aging (AG09935-01A1) and Invacare Corporation. The objectives of the conference were to provide professionals in the field of health care with an opportunity to exchange experience and ideas and to analyze the appropriateness of various countries' models of home health care for their own elderly populations. The speakers - physicians, nurses, sociologists, and anthropologists as well as other professionals from the field of aging - were asked to highlight the historical, cultural, economic, and political factors that shaped their nation's response to population aging. Specifically each speaker in his or her presentation and in the extensively revised papers appearing in this volume attempted to: Describe the experience of their country in meeting the long-term care needs of the elderly in their homes; Explore how institutional care and home care are integrated in their country; Review the financial and administrative mechanisms that promote and maintain the delivery of home care services; Explain how level of resources and population composition and distribution affect the development of programs appropriate to the needs of their elderly. The nations represented in this volume range from those such as Ghana and Brazil in which the aging of the population is perceived primarily as an "emerging" problem to those such as Sweden in which the elderly already constitute 17% of the population. Economically the countries include capitalist societies such as Japan and the United States as well as socialist (or transitional) societies such as Slovenia, China, and the Ukraine. Regardless of level of economic development nearly all of the countries (China is an exception) are facing an increase in their elderly populations at a time of decreasing economic growth. Not surprisingly policymakers are talking less about expanding services for the elderly and more about restricting costs. Thus, the debate about home care though usually couched in terms of family and client preferences is increasingly couched in economic terms as more cost-effective than alternative forms of care. While such savings may be possible if the alternative is hospital care, they are less likely, Doty points out, if client needs are high and the alternative is some form of congregate "assisted living." One of the key concerns raised in discussions about home care is the extent to Journal of Cross-Cultural Gerontology 8: 291-300, 1993. 9 1993 KluwerAcademic Publishers. Printed in the Netherlands.
292
CHARLOTI'EIKELS
which the provision of home care services complements or substitutes for family or other informal caregiving. If the former is the case, home care may be legitimately viewed as enabling families by lessening their burdens and, thereby, making it possible for them to continue caregiving. If the latter is the case, however, home care is simply replacing "free" care with government-subsidized care. The papers by Brodsky and Naon on Israel and Johansson on Sweden suggest that complementarity rather than substitution is the more common outcome. A vexing issue in many countries is deciding whether medical services delivered in the home should be distinguished from merely social or custodial services and be granted preferential funding. Some governments, such as the United States as Schaffer points out, readily reimburse for medically necessary care but resist paying for care that is perceived as not medically necessary. Interestingly the status of a particular service is often determined by the status of the client, e.g., meals service provided to someone recuperating from hip replacement is reimbursable but provided to someone who is healthy but demented is not. In other countries the goal is providing assistance to those who need R simply to function rather than to recover. Furthermore when distinctions regarding funding are made between these types of services, they are likely to be provided under different administrative structures, a circumstance that easily leads to fragmentation of care and the need for case management. Another funding issue involves access to care. Should home care (and other health services) be allocated on the basis of a means test or be available to all on the basis of need alone? Should some segments of the elderly population, such as state workers, be privileged while those in the collective or private sectors be required to pay for their care? Should those who live alone be given preference over those who live in multi-person households? Should rural dwellers have a narrower range of service options than urban dwellers? Differentiating among different categories of elderly certainly provides an opportunity for governments to generate cost-savings. Though Westerners frequently assume that the elderly in developing countries do not have the same kinds of needs as those in industrialized societies or that if they do their family members can easily provide the necessary care, Ken Tout, a long-time consultant to developing countries, maintained in his dinner address that both these assumptions are increasingly out-of-date. Westerners still envision the developing world as one in which a population explosion is just barely held in check by infectious diseases. In fact, Tout pointed out, most developing countries already have falling birth rates and in many mortality is more often the result of chronic diseases (circulatory and respiratory problems as well as cancer) than of acute conditions. Meeting the needs of this burgeoning elderly population is made especially difficult by the low standard of living in most developing countries and by the fact that to raise their personal standard of living mauy people must migrate from rural to urban areas. Such migration compromises the social support available to the elderly without necessarily improving their economic cir-
INTRODUCTION
293
cumstances. Tout cited one large scale study carried out in India (Oberai and Singh 1983) that revealed that only 50% of migrants remit contributions back to their home communities, that those least likely to remit are those leaving older relatives at home, and that remittances to rural areas decline over time. When families are poor, looking after the elderly may be difficult or impossible to manage and illnesses may go untreated. Furthermore when countries are poor, their governments are not in a position to provide any kind of back-up. In this context of poverty, Tout argued, finding ways to shore up a family's economic status by providing income-generating opportunities to the elderly may play a greater role in enhancing their personal security and well-being than, say, increasing the number of physicians because without money families will not be able or willing to call on the services of physicians. Fm-thermore once the elderly are viewed as playing an important economic role, families (and societies) might come to pay more attention to their other needs. Thus Tout argues for a special role for the voluntary or non-governmental sector in developing countries - that of helping the elderly to help themselves by developing self-sustaining small businesses that both meet a local need and provide a source of funds to the elderly who run them. Specific examples of these kinds of operations in a variety of countries are provided in his 1989 book,
Ageing in Developing Countries. The issues raised in this overview are elaborated on in the case studies of individual countries. A brief preview of each of the articles is presented below. CASE STUDIES
Ghana Nana Apt describes care of the elderly in Ghana as an "emerging" issue. She, like Tout, points out that the two factors hampering the provision of family care there is almost no other kind of home care - are migration and limited financial resources. As long as rural elders remain capable of famaing, they are usually able to supply their own subsistence needs, and even when their own children have migrated, they are still likely to be able to rely for care, at least to some extent, on local members of the extended family. Elders who move to the city to live with or near their children become far more vulnerable to the vagaries of their relationship with their children. Because of the monetized nature of the urban economy and their own financial dependence, elders have few options other than to rely on their children. In contrast to more developed societies, Apt finds that grandchildren play a vital role in assisting with care of the elderly. Grandchildren frequently sleep with the elder, run errands, and otherwise assist their own parents in meeting their filial obligations to the senior generation. -
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CHARLOTTEIKELS
Brazil Brazil's population is aging very rapidly - the elderly will increase from 5% of the population in the 1980s to 14% by 2025. Like Apt in Ghana, Ramos, Perracini, Rosa, and Kalache find that the family in Brazil is also on the frontline economically and in terms of service provision. Because the majority of the population lives below the poverty line it is unlikely that many families will be able to provide much care to the elderly. To obtain some sense of the needs of older people Ramos et al. conducted functional assessments of community dwelling elderly and found high rates of chronic illness and disability, conditions that make living independently difficult. Infectious diseases now account for less than 8% of deaths whereas cardiovascular diseases account for more than 35%. Yet Brazil's national health policy remains very much geared to the needs of children. The authors argue for a reorientation that would provide rehabilitation services for the elderly.
Slovenia Slajmer-Japelj reports on the consequences of rapid industrialization for Slovenia. As part of the former Yugoslavia, Slovenia moved abruptly from a feudal rural society to an urban society in which women increasingly work outside of the home reducing their capacity to look after their households. In order to keep women in the labor force the state has compensated for this reduction to some extent by providing day care (for children), housekeeping services, and restaurants at schools and the work place, but no new services were developed to care for the elderly. Instead institutionalization remained the primary mode of care until 1986 when the Community Nursing Services assumed a special role in meeting the needs of the elderly. Two models, one rural and one urban, were adopted each of which requires the community nurse to organize medical and social services for older people in their homes. The costs of home care are covered in the same proportion as the costs of hospital or nursing home stays. Furthermore a great deal of attention is now devoted to health promotion and other preventive services that are provided free of charge as these programs are part of the national health plan.
China In their paper on the chronically ill elderly in China Wang and Schneider focus on the family sickbed program. Although originally started in the city of Tianjin, this program is mandated by the Ministry of Public Health for all urban districts in China and expanded rapidly during the 1980s. The family sickbed is simple in concept. A chronically ill person is enrolled as an external patient of a particular hospital or public health clinic, and a doctor or nurse makes regular visits to that patient in his or her home. The functions of the service are several: (1) to provide medical care to a person unable to come to the outpatient depaxXment;
INTRODUC~ON
295
(2) to avoid a hospital admission (urban hospitals are generally overcrowded and the chronically ill are often turned away in favor of those with more treatable conditions), and (3) to provide an additional source of income to the hospital and its medical staff. In their detailed study of 17 families Wang and Schneider document how critical family care is to the success of the sickbed program as well as the role of the work unit in reimbursing or partially reimbursing the costs of home care. Ukraine In the Ukraine Bezrukov reports a shortage of hospital and nursing home beds. This shortage along with the decreased mobility associated with advanced old age means that many elderly fail to seek treatment or do so only late in the course of their illness. One of the greatest unmet needs of the elderly is for rehabilitation. Many clinics lack rehabilitation units, and hospitals have a tendency to discharge undertreated elderly patients without any follow-up. Furthermore there are no sound criteria for determining the most appropriate placement. To deal with both of these problems Bezrukov and his colleagues developed a multidimensional assessment tool (ASKORUSS) that can be easily used in both community and institutional settings. The resulting graphic display of a patient's disability profile encompassing 10 areas allows the practitioner to determine very quickly whether home care, institutional care, or hospitalization is desirable. A comparison of a sequence of such profiles quickly reveals the nature of any changes in a patient's functioning over time. The aggregate profiles of patients in an institution can be used to estimate staffing needs on a standard and rationalized basis - issues that become especially important when cost-benefit calculations are being made. Ireland In Ireland Larragy finds that informal care is the principle source of care for dependent elderly people. Formal care seems to be provided on a substitutional basis, that is, becoming available only when the informal system breaks down. He argues for extending and refining these services and, in particular, for making them more relevant to heavily burdened informal carers. Currently home care services are implicitly aimed at those who live alone and are least available to those with caters in their own households. Although Ireland has witnessed an expansion of community services for the elderly over the past 25 years, there is s011 considerable room for growth. Larragy notes that in an environment in which 17.5% of the elderly are receiving informal care and 5% institutional care, a figure of less than 3% receiving home help or meals services seems low. Israel In their paper Brodsky and Naon address the relationship between formal and
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informal care by studying the impact of Israel's 1986 Community Long-term Care Insurance Law which was fully implemented in 1988. The principle aims of their study were to examine the extent to which the law has improved the appropriateness of care, reduced unmet needs, and lessened the burden on families of disabled elderly living in the community and to assess the degree to which the expansion of formal services has complemented or substituted for informal assistance. The new law represents a dramatic change in Israel's system of long-term care in both the quantity of resources available for home care and the organizational framework for the provision of services. For example, in 1981 only 8% of all government long-te~n care financing was being allocated to community care services but by 1989 46% of all such financing was being allocated to community care. Following implementation of the law 40% of the elderly received additional services, 32% experienced an improvement in the level of disability, and 58% reported an improvement in their sense of well-being. Of special interest is the finding that far from lessening the amount of assistance provided by informal caregivers, the addition of formal services actually contributed to its increase by an average of 2 hours a week - clear support for the complementarity hypothesis. Sweden Sweden has long enjoyed a reputation as a nation providing publicly funded services to all age groups but especially to the elderly. Public policies and programs providing health and social services as well as pensions and other forms of social insurance are highly developed. As Johansson points out, a society with 81% of its women in the labor force and in which few adult children live with their parents presupposes alternatives to family care. Eligibility for services is based on assessed needs. There are no financial criteria though recipients may be charged modest fees based on their income. An important part of the home care concept in Sweden is the availability of help 24 hours a day. Special evening and night patrols staffed by nurses or nurse aides and home helpers provide care to the very frail and to bedridden patients around the clock. Nevertheless informal caregiving by family members remains very important, a fact given official recognition by the implementation in 1989 of a care leave policy. This policy entitles employed persons to take time off from work and be paid an insurance allowance for up to 30 days to look after an elderly (or other dependent) family member. Municipalities provide the bulk of funding for services, but in the context of an economic slowdown and a consensus that taxes cannot be raised any higher, Sweden too has been forced to re-examine the scope and nature of its health and social services. So far municipalities have responded to these constraints by targetting services to the most needy and by increasing fees to individual users.
INTRODUCTION
297
United States The papers by Schaffer and Birmingham analyze the regulatory structure of health care and its impact on the growth of home care services for the elderly in the United States. Schaffer focuses on the problems posed by Medicare guidelines which she finds to be less supportive of innovation than those of private insurers. In particular Medicare's orientation to curing rather than maintaining makes it difficult for those who are merely frail and not medically needy to receive reimbursement for home-making or custodial services. Birmingham focuses on the impact of reimbursement incentives for early hospital discharge and provides 2 cases illustrating the financial costs as well as the high tech possibilities of home care. As patients are now being discharged earlier in the recovery process, the home care industry has had to respond by providing increasingly sophisticated services. During the 1980s advances in technology and the development of efficient and easy to use ventilators, monitors, intravenous pumps, and therapeutic beds have made possible a level of home care previously thought appropriate only in hospitals.
The Netherlands Two of the papers in this volume - that by Schrijvers and Dingemans and that by Maeda and Takahashi - look specifically at home care for the terminally ill. Schrijvers and Dingemans define terminal home care in the Netherlands as "care at home for the symptoms of an incurable fatal disease." The concept is narrower than that of palliative care as it applies mostly to the final month or two of life. Terminal home care seems to involve primarily social support, work on meals preparation or cleaning up, and helping the patient to get up; only a small minority of visits necessitate specialized nursing. The Netherlands, of course, is well known in the hea/th care literature because of its acceptance of physician aid in dying. One 1990 study indicated that 38% of the deaths in the Netherlands involve medical decisions concerning the end of life (MDEL). Of these nearly half involved the possibility of shortening the patient's life in the course of using high dosages of opiates to relieve pain. A similar proportion of MDELs involved non-treatment decisions. Only 1.8% of all deaths resulted from euthanasia, i.e., the administration of lethal drugs at the request of the patient. Most Dutch patients including most cancer patients continue to die in hospitals rather than at home. Schrijvers and Dingemans attribute this distribution to shortcomings in the health care system - specifically to lack of cooperation, including lack of basic communication, between medical specialists and family doctors and to a shortage of home care services, particularly outside of ordinary business hours.
Japan Prior to the 1980s most deaths in Japan occurred in the home. In 1980, for
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example, only 38% of deaths occurred in hospitals or nursing homes, but by 1990 this figure had doubled to 75.1%. Maeda and Takahashi attribute this shift partly to changes in family structure but also to national reimbursement policies that reward doctors for hospitalizing patients and administering many dubious treatments, injections, and medications during the patient's last days. Average length of stay in general hospitals in Japan is 40 days. Maeda and Takahashi argue that a return to dying at home is not only in accordance with the wishes of many patients but also represents a major cost savings. They present successful examples of an urban and a rural program that attempt to provide terminal care in the home. THE FUTURE OF HOME HEALTH CARE: REFORM AND RESEARCH
Reform The final paper in this volume provides an international overview of long-term care reform. Doty points out that while assuring quality of care is a priority of reformers, long-term care reform is motivated primarily by cost considerations. Reform strategies include: (1) eliminating unnecessary and inappropriate use of acute medical services (Dory believes that in this regard other nations can learn from the U.S. experience); (2) promoting home and community-based services over institutional services, and (3) integrating the service delivery system to overcome administrative fragmentation and "perverse" financial incentives that encourage lack of cost-consciousness in service provision. Dory ends with a comparison of the approaches underway in the United Kingdom and Germany, describing them as in a sense "demonstration projects" from which U.S. policy analysts have much to learn. She points out that in the U.S. the push to include long-term care benefits in Medicare/Social Security is to go the route of the German employment-based insurance system whereas the state of Oregon's Medicaid option allowing the pooling of federal funding for all long-term care services is similar to the British approach of block grants to local authorities.
Research In a summing up of the conference, Marcia t r y , Chief of Social Science Research on Aging, Behavioral and Social Research Program of the National Institute on Aging, praised the speakers for helping to dispel some of the misconceptions Americans have about health care delivery in other industrialized countries and about the situation of the elderly in developing countries, but also pointed out that many methodological and conceptual problems continue to plague cross-national and cross-cultural research. Until these problems are resolved, policy analysts must exercise great caution in extrapolating from findings based on research conducted in countries other than their own.
INTRODUCTION
299
Ory highlighted six areas to which researchers could profitably direct their attention. The first is the area of definitional clarity. Too often discussions about home care are carried out at the global level, treating home care as a monolithic entity. Home care is usually contrasted with institutional care and, indeed, is usually touted as a means of reducing rates of institutionalization. Yet which residential settings are counted as "homes" and which are counted as "institutions" varies across countries. Are assisted living accommodations homes? Are life care retirement communities institutions? Comparisons of cross-national rates of institutionalization can be confounded by differences in method of categorization. Similar definitional problems must be addressed with regard to home care services. The costs and outcomes of services cannot be treated in aggregate. Home care services must be differentiated at a minimum as medical or social, as high tech, skilled, or custodial before meaningful comparisons can be made. A second area requiring greater clarity is the interpretation of measures in terms of their cultural context. For example, what are the implications for social support of "living alone" in a community composed of isolated farmsteads compared to nucleated villages or high-rise apartment buildings? What does "needs help from others in toileting" mean in the absence of in-door plumbing? Abstract measures, even if identical in two countries, cannot be assumed to translate into the same service needs. (See Ikels 1991 for a fuller discussion of this topic.) Ory's third goal for researchers is to design and evaluate models of care that link specific outcomes to particular interventions. A further need is to broaden the nature of outcome measures to encompass more than simply cost-effectiveness, i.e., by including measures of quality of care and the well-being of the recipient. Fifthly, researchers need to disaggregate the category of elderly and attend to the health care needs of special subpopulations, such as the oldest old, minority and ethnic populations, and the rural elderly. Finally researchers must pay attention to changes over time: changes in needs for care, in the use of services, and in preferences for services. This type of information is best obtained through longitudinal studies. By setting forth this research agenda Ory is providing clear guidelines for the next round of NIA funding. Readers take heed! ACKNOWLEDGEMENTS Earlier versions of the papers contained in this volume were presented at the Thirteenth Annual Symposium of the University Center on Aging and Health held at the Cleveland Sheraton City Centre Hotel in Cleveland on October 22-23, 1992. Funding for the conference on "Home Health Care and Elders: International Perspectives" was provided by the National Institute on Aging (AG09935-01A1) and by Invacare Corporation. This conference could not have come about without the help and suggestions of the Senior Faculty Associates Planning Committee and the administrative and logistical direction of Drs. Marie Haug and May Wykle and of Ms. Diane Ferris !
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CHARLOTTEIKELS REFERENCES
Ikels, C. 1991 Aging and Disability in China: Cultural Issues in Measurement and Interpretation. Social Science & Medicine 32(6); 649-665. Oberai, A.S. and H.K. Manmohan Singh 1983 Causes and Consequences of Internal Migration: A Study in the Indian Punjab. New Delhi: Oxford University Press for ILO. Tout, K. 1989 Ageing in Developing Countries. New York: Oxford University Press.
Department of Anthropology Case Western Reserve University Cleveland, OH 44106, U.S.A.
INTRODUCTION H O M E H E A L T H CARE: A N O V E R V I E W O F T H E ISSUES
The papers in this special issue had their origins in a two day conference on "Home Health Care and Elders: International Perspectives" that was held in Cleveland in October 1992 under the auspices of the University Center on Aging and Health of Case Western Reserve University. Funding for the conference was provided by the National Institute on Aging (AG09935-01A1) and Invacare Corporation. The objectives of the conference were to provide professionals in the field of health care with an opportunity to exchange experience and ideas and to analyze the appropriateness of various countries' models of home health care for their own elderly populations. The speakers - physicians, nurses, sociologists, and anthropologists as well as other professionals from the field of aging - were asked to highlight the historical, cultural, economic, and political factors that shaped their nation's response to population aging. Specifically each speaker in his or her presentation and in the extensively revised papers appearing in this volume attempted to: Describe the experience of their country in meeting the long-term care needs of the elderly in their homes; Explore how institutional care and home care are integrated in their country; Review the financial and administrative mechanisms that promote and maintain the delivery of home care services; Explain how level of resources and population composition and distribution affect the development of programs appropriate to the needs of their elderly. The nations represented in this volume range from those such as Ghana and Brazil in which the aging of the population is perceived primarily as an "emerging" problem to those such as Sweden in which the elderly already constitute 17% of the population. Economically the countries include capitalist societies such as Japan and the United States as well as socialist (or transitional) societies such as Slovenia, China, and the Ukraine. Regardless of level of economic development nearly all of the countries (China is an exception) are facing an increase in their elderly populations at a time of decreasing economic growth. Not surprisingly policymakers are talking less about expanding services for the elderly and more about restricting costs. Thus, the debate about home care though usually couched in terms of family and client preferences is increasingly couched in economic terms as more cost-effective than alternative forms of care. While such savings may be possible if the alternative is hospital care, they are less likely, Doty points out, if client needs are high and the alternative is some form of congregate "assisted living." One of the key concerns raised in discussions about home care is the extent to Journal of Cross-Cultural Gerontology 8: 291-300, 1993. 9 1993 KluwerAcademic Publishers. Printed in the Netherlands.
292
CHARLOTI'EIKELS
which the provision of home care services complements or substitutes for family or other informal caregiving. If the former is the case, home care may be legitimately viewed as enabling families by lessening their burdens and, thereby, making it possible for them to continue caregiving. If the latter is the case, however, home care is simply replacing "free" care with government-subsidized care. The papers by Brodsky and Naon on Israel and Johansson on Sweden suggest that complementarity rather than substitution is the more common outcome. A vexing issue in many countries is deciding whether medical services delivered in the home should be distinguished from merely social or custodial services and be granted preferential funding. Some governments, such as the United States as Schaffer points out, readily reimburse for medically necessary care but resist paying for care that is perceived as not medically necessary. Interestingly the status of a particular service is often determined by the status of the client, e.g., meals service provided to someone recuperating from hip replacement is reimbursable but provided to someone who is healthy but demented is not. In other countries the goal is providing assistance to those who need R simply to function rather than to recover. Furthermore when distinctions regarding funding are made between these types of services, they are likely to be provided under different administrative structures, a circumstance that easily leads to fragmentation of care and the need for case management. Another funding issue involves access to care. Should home care (and other health services) be allocated on the basis of a means test or be available to all on the basis of need alone? Should some segments of the elderly population, such as state workers, be privileged while those in the collective or private sectors be required to pay for their care? Should those who live alone be given preference over those who live in multi-person households? Should rural dwellers have a narrower range of service options than urban dwellers? Differentiating among different categories of elderly certainly provides an opportunity for governments to generate cost-savings. Though Westerners frequently assume that the elderly in developing countries do not have the same kinds of needs as those in industrialized societies or that if they do their family members can easily provide the necessary care, Ken Tout, a long-time consultant to developing countries, maintained in his dinner address that both these assumptions are increasingly out-of-date. Westerners still envision the developing world as one in which a population explosion is just barely held in check by infectious diseases. In fact, Tout pointed out, most developing countries already have falling birth rates and in many mortality is more often the result of chronic diseases (circulatory and respiratory problems as well as cancer) than of acute conditions. Meeting the needs of this burgeoning elderly population is made especially difficult by the low standard of living in most developing countries and by the fact that to raise their personal standard of living mauy people must migrate from rural to urban areas. Such migration compromises the social support available to the elderly without necessarily improving their economic cir-
INTRODUCTION
293
cumstances. Tout cited one large scale study carried out in India (Oberai and Singh 1983) that revealed that only 50% of migrants remit contributions back to their home communities, that those least likely to remit are those leaving older relatives at home, and that remittances to rural areas decline over time. When families are poor, looking after the elderly may be difficult or impossible to manage and illnesses may go untreated. Furthermore when countries are poor, their governments are not in a position to provide any kind of back-up. In this context of poverty, Tout argued, finding ways to shore up a family's economic status by providing income-generating opportunities to the elderly may play a greater role in enhancing their personal security and well-being than, say, increasing the number of physicians because without money families will not be able or willing to call on the services of physicians. Fm-thermore once the elderly are viewed as playing an important economic role, families (and societies) might come to pay more attention to their other needs. Thus Tout argues for a special role for the voluntary or non-governmental sector in developing countries - that of helping the elderly to help themselves by developing self-sustaining small businesses that both meet a local need and provide a source of funds to the elderly who run them. Specific examples of these kinds of operations in a variety of countries are provided in his 1989 book,
Ageing in Developing Countries. The issues raised in this overview are elaborated on in the case studies of individual countries. A brief preview of each of the articles is presented below. CASE STUDIES
Ghana Nana Apt describes care of the elderly in Ghana as an "emerging" issue. She, like Tout, points out that the two factors hampering the provision of family care there is almost no other kind of home care - are migration and limited financial resources. As long as rural elders remain capable of famaing, they are usually able to supply their own subsistence needs, and even when their own children have migrated, they are still likely to be able to rely for care, at least to some extent, on local members of the extended family. Elders who move to the city to live with or near their children become far more vulnerable to the vagaries of their relationship with their children. Because of the monetized nature of the urban economy and their own financial dependence, elders have few options other than to rely on their children. In contrast to more developed societies, Apt finds that grandchildren play a vital role in assisting with care of the elderly. Grandchildren frequently sleep with the elder, run errands, and otherwise assist their own parents in meeting their filial obligations to the senior generation. -
294
CHARLOTTEIKELS
Brazil Brazil's population is aging very rapidly - the elderly will increase from 5% of the population in the 1980s to 14% by 2025. Like Apt in Ghana, Ramos, Perracini, Rosa, and Kalache find that the family in Brazil is also on the frontline economically and in terms of service provision. Because the majority of the population lives below the poverty line it is unlikely that many families will be able to provide much care to the elderly. To obtain some sense of the needs of older people Ramos et al. conducted functional assessments of community dwelling elderly and found high rates of chronic illness and disability, conditions that make living independently difficult. Infectious diseases now account for less than 8% of deaths whereas cardiovascular diseases account for more than 35%. Yet Brazil's national health policy remains very much geared to the needs of children. The authors argue for a reorientation that would provide rehabilitation services for the elderly.
Slovenia Slajmer-Japelj reports on the consequences of rapid industrialization for Slovenia. As part of the former Yugoslavia, Slovenia moved abruptly from a feudal rural society to an urban society in which women increasingly work outside of the home reducing their capacity to look after their households. In order to keep women in the labor force the state has compensated for this reduction to some extent by providing day care (for children), housekeeping services, and restaurants at schools and the work place, but no new services were developed to care for the elderly. Instead institutionalization remained the primary mode of care until 1986 when the Community Nursing Services assumed a special role in meeting the needs of the elderly. Two models, one rural and one urban, were adopted each of which requires the community nurse to organize medical and social services for older people in their homes. The costs of home care are covered in the same proportion as the costs of hospital or nursing home stays. Furthermore a great deal of attention is now devoted to health promotion and other preventive services that are provided free of charge as these programs are part of the national health plan.
China In their paper on the chronically ill elderly in China Wang and Schneider focus on the family sickbed program. Although originally started in the city of Tianjin, this program is mandated by the Ministry of Public Health for all urban districts in China and expanded rapidly during the 1980s. The family sickbed is simple in concept. A chronically ill person is enrolled as an external patient of a particular hospital or public health clinic, and a doctor or nurse makes regular visits to that patient in his or her home. The functions of the service are several: (1) to provide medical care to a person unable to come to the outpatient depaxXment;
INTRODUC~ON
295
(2) to avoid a hospital admission (urban hospitals are generally overcrowded and the chronically ill are often turned away in favor of those with more treatable conditions), and (3) to provide an additional source of income to the hospital and its medical staff. In their detailed study of 17 families Wang and Schneider document how critical family care is to the success of the sickbed program as well as the role of the work unit in reimbursing or partially reimbursing the costs of home care. Ukraine In the Ukraine Bezrukov reports a shortage of hospital and nursing home beds. This shortage along with the decreased mobility associated with advanced old age means that many elderly fail to seek treatment or do so only late in the course of their illness. One of the greatest unmet needs of the elderly is for rehabilitation. Many clinics lack rehabilitation units, and hospitals have a tendency to discharge undertreated elderly patients without any follow-up. Furthermore there are no sound criteria for determining the most appropriate placement. To deal with both of these problems Bezrukov and his colleagues developed a multidimensional assessment tool (ASKORUSS) that can be easily used in both community and institutional settings. The resulting graphic display of a patient's disability profile encompassing 10 areas allows the practitioner to determine very quickly whether home care, institutional care, or hospitalization is desirable. A comparison of a sequence of such profiles quickly reveals the nature of any changes in a patient's functioning over time. The aggregate profiles of patients in an institution can be used to estimate staffing needs on a standard and rationalized basis - issues that become especially important when cost-benefit calculations are being made. Ireland In Ireland Larragy finds that informal care is the principle source of care for dependent elderly people. Formal care seems to be provided on a substitutional basis, that is, becoming available only when the informal system breaks down. He argues for extending and refining these services and, in particular, for making them more relevant to heavily burdened informal carers. Currently home care services are implicitly aimed at those who live alone and are least available to those with caters in their own households. Although Ireland has witnessed an expansion of community services for the elderly over the past 25 years, there is s011 considerable room for growth. Larragy notes that in an environment in which 17.5% of the elderly are receiving informal care and 5% institutional care, a figure of less than 3% receiving home help or meals services seems low. Israel In their paper Brodsky and Naon address the relationship between formal and
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informal care by studying the impact of Israel's 1986 Community Long-term Care Insurance Law which was fully implemented in 1988. The principle aims of their study were to examine the extent to which the law has improved the appropriateness of care, reduced unmet needs, and lessened the burden on families of disabled elderly living in the community and to assess the degree to which the expansion of formal services has complemented or substituted for informal assistance. The new law represents a dramatic change in Israel's system of long-term care in both the quantity of resources available for home care and the organizational framework for the provision of services. For example, in 1981 only 8% of all government long-te~n care financing was being allocated to community care services but by 1989 46% of all such financing was being allocated to community care. Following implementation of the law 40% of the elderly received additional services, 32% experienced an improvement in the level of disability, and 58% reported an improvement in their sense of well-being. Of special interest is the finding that far from lessening the amount of assistance provided by informal caregivers, the addition of formal services actually contributed to its increase by an average of 2 hours a week - clear support for the complementarity hypothesis. Sweden Sweden has long enjoyed a reputation as a nation providing publicly funded services to all age groups but especially to the elderly. Public policies and programs providing health and social services as well as pensions and other forms of social insurance are highly developed. As Johansson points out, a society with 81% of its women in the labor force and in which few adult children live with their parents presupposes alternatives to family care. Eligibility for services is based on assessed needs. There are no financial criteria though recipients may be charged modest fees based on their income. An important part of the home care concept in Sweden is the availability of help 24 hours a day. Special evening and night patrols staffed by nurses or nurse aides and home helpers provide care to the very frail and to bedridden patients around the clock. Nevertheless informal caregiving by family members remains very important, a fact given official recognition by the implementation in 1989 of a care leave policy. This policy entitles employed persons to take time off from work and be paid an insurance allowance for up to 30 days to look after an elderly (or other dependent) family member. Municipalities provide the bulk of funding for services, but in the context of an economic slowdown and a consensus that taxes cannot be raised any higher, Sweden too has been forced to re-examine the scope and nature of its health and social services. So far municipalities have responded to these constraints by targetting services to the most needy and by increasing fees to individual users.
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United States The papers by Schaffer and Birmingham analyze the regulatory structure of health care and its impact on the growth of home care services for the elderly in the United States. Schaffer focuses on the problems posed by Medicare guidelines which she finds to be less supportive of innovation than those of private insurers. In particular Medicare's orientation to curing rather than maintaining makes it difficult for those who are merely frail and not medically needy to receive reimbursement for home-making or custodial services. Birmingham focuses on the impact of reimbursement incentives for early hospital discharge and provides 2 cases illustrating the financial costs as well as the high tech possibilities of home care. As patients are now being discharged earlier in the recovery process, the home care industry has had to respond by providing increasingly sophisticated services. During the 1980s advances in technology and the development of efficient and easy to use ventilators, monitors, intravenous pumps, and therapeutic beds have made possible a level of home care previously thought appropriate only in hospitals.
The Netherlands Two of the papers in this volume - that by Schrijvers and Dingemans and that by Maeda and Takahashi - look specifically at home care for the terminally ill. Schrijvers and Dingemans define terminal home care in the Netherlands as "care at home for the symptoms of an incurable fatal disease." The concept is narrower than that of palliative care as it applies mostly to the final month or two of life. Terminal home care seems to involve primarily social support, work on meals preparation or cleaning up, and helping the patient to get up; only a small minority of visits necessitate specialized nursing. The Netherlands, of course, is well known in the hea/th care literature because of its acceptance of physician aid in dying. One 1990 study indicated that 38% of the deaths in the Netherlands involve medical decisions concerning the end of life (MDEL). Of these nearly half involved the possibility of shortening the patient's life in the course of using high dosages of opiates to relieve pain. A similar proportion of MDELs involved non-treatment decisions. Only 1.8% of all deaths resulted from euthanasia, i.e., the administration of lethal drugs at the request of the patient. Most Dutch patients including most cancer patients continue to die in hospitals rather than at home. Schrijvers and Dingemans attribute this distribution to shortcomings in the health care system - specifically to lack of cooperation, including lack of basic communication, between medical specialists and family doctors and to a shortage of home care services, particularly outside of ordinary business hours.
Japan Prior to the 1980s most deaths in Japan occurred in the home. In 1980, for
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example, only 38% of deaths occurred in hospitals or nursing homes, but by 1990 this figure had doubled to 75.1%. Maeda and Takahashi attribute this shift partly to changes in family structure but also to national reimbursement policies that reward doctors for hospitalizing patients and administering many dubious treatments, injections, and medications during the patient's last days. Average length of stay in general hospitals in Japan is 40 days. Maeda and Takahashi argue that a return to dying at home is not only in accordance with the wishes of many patients but also represents a major cost savings. They present successful examples of an urban and a rural program that attempt to provide terminal care in the home. THE FUTURE OF HOME HEALTH CARE: REFORM AND RESEARCH
Reform The final paper in this volume provides an international overview of long-term care reform. Doty points out that while assuring quality of care is a priority of reformers, long-term care reform is motivated primarily by cost considerations. Reform strategies include: (1) eliminating unnecessary and inappropriate use of acute medical services (Dory believes that in this regard other nations can learn from the U.S. experience); (2) promoting home and community-based services over institutional services, and (3) integrating the service delivery system to overcome administrative fragmentation and "perverse" financial incentives that encourage lack of cost-consciousness in service provision. Dory ends with a comparison of the approaches underway in the United Kingdom and Germany, describing them as in a sense "demonstration projects" from which U.S. policy analysts have much to learn. She points out that in the U.S. the push to include long-term care benefits in Medicare/Social Security is to go the route of the German employment-based insurance system whereas the state of Oregon's Medicaid option allowing the pooling of federal funding for all long-term care services is similar to the British approach of block grants to local authorities.
Research In a summing up of the conference, Marcia t r y , Chief of Social Science Research on Aging, Behavioral and Social Research Program of the National Institute on Aging, praised the speakers for helping to dispel some of the misconceptions Americans have about health care delivery in other industrialized countries and about the situation of the elderly in developing countries, but also pointed out that many methodological and conceptual problems continue to plague cross-national and cross-cultural research. Until these problems are resolved, policy analysts must exercise great caution in extrapolating from findings based on research conducted in countries other than their own.
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Ory highlighted six areas to which researchers could profitably direct their attention. The first is the area of definitional clarity. Too often discussions about home care are carried out at the global level, treating home care as a monolithic entity. Home care is usually contrasted with institutional care and, indeed, is usually touted as a means of reducing rates of institutionalization. Yet which residential settings are counted as "homes" and which are counted as "institutions" varies across countries. Are assisted living accommodations homes? Are life care retirement communities institutions? Comparisons of cross-national rates of institutionalization can be confounded by differences in method of categorization. Similar definitional problems must be addressed with regard to home care services. The costs and outcomes of services cannot be treated in aggregate. Home care services must be differentiated at a minimum as medical or social, as high tech, skilled, or custodial before meaningful comparisons can be made. A second area requiring greater clarity is the interpretation of measures in terms of their cultural context. For example, what are the implications for social support of "living alone" in a community composed of isolated farmsteads compared to nucleated villages or high-rise apartment buildings? What does "needs help from others in toileting" mean in the absence of in-door plumbing? Abstract measures, even if identical in two countries, cannot be assumed to translate into the same service needs. (See Ikels 1991 for a fuller discussion of this topic.) Ory's third goal for researchers is to design and evaluate models of care that link specific outcomes to particular interventions. A further need is to broaden the nature of outcome measures to encompass more than simply cost-effectiveness, i.e., by including measures of quality of care and the well-being of the recipient. Fifthly, researchers need to disaggregate the category of elderly and attend to the health care needs of special subpopulations, such as the oldest old, minority and ethnic populations, and the rural elderly. Finally researchers must pay attention to changes over time: changes in needs for care, in the use of services, and in preferences for services. This type of information is best obtained through longitudinal studies. By setting forth this research agenda Ory is providing clear guidelines for the next round of NIA funding. Readers take heed! ACKNOWLEDGEMENTS Earlier versions of the papers contained in this volume were presented at the Thirteenth Annual Symposium of the University Center on Aging and Health held at the Cleveland Sheraton City Centre Hotel in Cleveland on October 22-23, 1992. Funding for the conference on "Home Health Care and Elders: International Perspectives" was provided by the National Institute on Aging (AG09935-01A1) and by Invacare Corporation. This conference could not have come about without the help and suggestions of the Senior Faculty Associates Planning Committee and the administrative and logistical direction of Drs. Marie Haug and May Wykle and of Ms. Diane Ferris !
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Ikels, C. 1991 Aging and Disability in China: Cultural Issues in Measurement and Interpretation. Social Science & Medicine 32(6); 649-665. Oberai, A.S. and H.K. Manmohan Singh 1983 Causes and Consequences of Internal Migration: A Study in the Indian Punjab. New Delhi: Oxford University Press for ILO. Tout, K. 1989 Ageing in Developing Countries. New York: Oxford University Press.
Department of Anthropology Case Western Reserve University Cleveland, OH 44106, U.S.A.
