Care of the Aged in Japan
Christie W. Kiefer
Technology and the “Ugly Decline”
The pursuit of scientific and technological progress has been, by practically any measure, Japan’s forte in this century. It is a pursuit that carries heavy costs in any society, but most consider it worth those costs because it seems to bring some image of a satisfying life closer to reality for the great majority of people. The ingredients of this satisfying life differ in detail from culture to culture and person to person, but fundamentally they include increased control over the conditions of one’s life or at least greater freedom from the bonds of poverty, illness, and arbitrary rule. It is a great irony, then, that any technologically advanced society brings to the lives of a majority of its people a long period of powerlessness, illness, and confinement. No advanced culture has yet resisted the power of technology to postpone death; yet none has found a way to guarantee freedom and dignity to even a sizeable minority of the resulting masses of disabled, frail, and terminally ill.
It becomes more and more likely that what the Japanese call the “ugly decline” (hen na kakō) will be a larger and larger share of each life. Yet there is no simple way to alter this process. Once a society has, one, the technological means to delay death for a substantial population, two, the political means to provide popular access to this technology, and three, an information industry that can quickly measure and disseminate the effects of one and two on mass longevity, then government will begin to use longevity itself as one measure of its strength and economic effectiveness. It will have entered what David Plath has called “the aging Olympics.” 90 There is a vicious economic circle in this process, which the recent history of Japan illustrates admirably.
As longevity increases, society at first applauds, pouring resources (and prestige) into the health care sector (see Lock and Long, this volume). At a later point the growing misery of the old unwell becomes apparent, but the first step cannot be reversed. Society must take a greater role in health care because of the economic dependency of this new “health problem” population. Later, I will discuss some examples of this process. The “ugly decline” is always bought at an ever higher cost to society as a whole, a cost not only in dollars but in the labor and anxiety of those, mostly wrinkled and grey themselves, who watch over that decline and try to lighten its oppression.
Because Japan industrialized late, fast, and thoroughly, the aging of Japanese society has also been sudden and disruptive. English-language reports of this phenomenon now span ten years (Plath 1972, 1973, 1980, 1983; Sparks 1973, 1975; Kinoshita 1981; D. Maeda 1983; Steslicke 1984), and a few statistics will convey its scope.
The proportion of the population over sixty-five years of age rose from 4.9 percent in 1950 to 9.0 percent in 1980, and is expected to reach 14 percent by the year 2000, making it comparable with the proportions in Great Britain and Scandinavia (Keizai Kikaku Chōhen 1982). The largest increase has been in the most medically frail sector of the aged, those over seventy-five years of age (D. Maeda 1983).
National medical costs for the aged rose 600 percent between 1973 and 1982, doubling from 10 percent to 20 percent of total health care costs (JICWELS 1983). U.S. costs roughly quadrupled in the same period (Muse and Sawyer 1982).
The number of nursing home beds in Japan nearly doubled in the six years between 1977 and 1983, from 55,000 to 97,000 (Asahi Shimbun Aug. 29, 1983).
More than one-fourth of all hospital beds for the acutely ill are occupied by people over the age of seventy (N. Maeda 1983a), and 1.6 percent of those over age sixty-five are in long-term care facilities (Prime Minister’s Office 1980), in contrast with America’s 5 percent. 91
In short, this demographic and medical revolution is transforming Japanese life and politics at a dizzying pace. Health laws are enacted and withdrawn; new municipal schemes for cutting the costs of geriatric care are formulated almost daily. Meanwhile, much is left to the unknown legions of families that must care for the disabled elderly. The overall picture, from a distance, is that of a society struggling to find solutions to a sudden, massive problem. One sees an outpouring of popular print and television time devoted to aging and health. One sees a bewildering variety of public and private local organizations doing admirable and sometimes puzzling things to try to improve the lives of the elderly, but with inadequate money and inadequately trained personnel. One also sees, among the healthy elderly, a pervasive anxiety about their own fate as they gradually lose physical and mental vigor.
The brief overview of Japan’s geriatric health care system given here cannot begin to document the impact of these demographic changes on individual life. By confining myself to some remarks on the emergence of the “ugly decline” as a social problem and the role of the Japanese government in trying to control it, I hope to provide a useful contrast with the way the problem is being handled in Western societies. Japan provides an interesting point of comparison with the West for two reasons: the first is the speed with which its population is aging; the second is the contrasts it presents to Western cultural views of what is ugly about medical dependency in old age.
National Policy and Health Care Costs
Turning to the problem of government’s role, let us first look at recent national policy. Before 1973 national health insurance covered 70 percent of health care costs. The insurance system had its problems, especially for the elderly. Because many of the elderly had no other health insurance, 30 percent of their costs were out-of-pocket. This led to a nationwide call for rōjin iryō muryōka, free medical care for the elderly. Insurance reimbursements to physicians are on a “reasonable fee” basis, thereby tempting them to keep their consultations as short as possible (Lock 1980). By 1963 the national government had recognized the growing problem of medical dependency and sought to combat it by detecting and treating diseases of the aged earlier and by establishing a minimum of institutional care for the destitute and chronically ill. In that year the Law for the Welfare of the Aged was passed, ordering municipalities to provide 92free health screening for those over sixty-five in an effort to promote wellness in this age group and to establish nursing homes for the disabled and homeless elderly. The number of nursing homes nevertheless remains fairly small, for reasons I will discuss later. The results of the health screening policy were disappointing. Less than 20 percent of the elderly participated in the screening in most places (N. Maeda 1983a), partly because many municipalities were short of the funds and personnel required to do the job well. Few of those identified as needing treatment actually showed up in doctors’ offices. The general effect was simply to provide free checkups to those who felt sick and would have consulted a doctor anyway. Further attempts to control rates of geriatric illness were made at the national level in 1970 and again in 1974, when blood pressure screening campaigns were announced to combat stroke, the leading cause of disability and death in Japan. These campaigns were also disappointing in their low rates of participation (N. Maeda 1983a).
Under the 1963 law the real difficulty from the government’s point of view was not the health of the people but the health of the powerful Liberal Democratic party. In the late 1960s and early 1970s Japan had broken out in local rashes of socialism. Many municipalities (including Tokyo) were offering free medical care for the elderly earlier than the national government. According to Kinoshita (1981), this is largely why, in 1973, the Diet passed an amendment to the welfare act that boosted hospital benefits and made most outpatient services free to those over seventy years of age. In retrospect, this policy seems to have been unsuccessful. The number of the elderly in physicians’ waiting rooms immediately doubled and health costs shot up 300 percent in the next four years. Meanwhile, the socialist rash seemed to clear up through the natural process of economic inflation, as local governments floundered in meeting medical service costs.
The worst problem with the 1973 amendment was that although it greatly increased public awareness, it also increased public cost due to the new government support of hospital expenses for the elderly. By 1978 Japan had ninety-five acute care beds per ten thousand persons, about twice the U.S. rate, and a hospital outlay of $41.5 billion per year (Hashimoto 1981; JICWELS 1983); and by 1981 the average hospital stay for acute care of those over age sixty-five was eighty-eight days at a cost of $51 per day (N. Maeda 1983a), as compared with the American average of eleven days at a cost (to Medicare) of about $400 per day (Muse and Sawyer 1982, 26). Apparently the lawmakers’ mistake was to 93think either that medical dependency would be born stoically by the people as before or that it would disappear if enough hospital medicine were available. They failed to see that they were trying to cure a problem that had been created by high-technology medicine—that is, medical dependency—by increasing the supply of high-technology medicine.
By the 1980s Japan was faced with a very threatening trend: the greatly increased use of health resources by the elderly. Unable to see the irony in this application of technical progress, many Japanese blamed the victims, the elderly themselves. Many of the elderly (especially the majority, the healthy ones) also disliked the existing policy, which they saw as somewhat patronizing. In February 1983 a new national policy was adopted to address the hospital cost problem. The Old Age Health Act, as it is called, does five things of interest to us here.
- It shifts the burden of costs from taxes to the insurance premiums of other, solvent health insurance systems, including society health, mutual aid, and other national programs.
- It strengthens preventive health care by making low-cost checkups available to those over forty years old.
- It controls indiscriminate use of services by requiring elderly patients to pay out-of-pocket four hundred yen for the first clinic visit in any given month and three hundred yen for each day of hospitalization.
- It controls profiteering by hospitals by reimbursing on a diminishing schedule—the longer the stay, the lower the rate.
- It encourages home care by providing discharge planning, day-care, and home health services.
No one yet knows what the long-term effects of this new plan will be. In the short run it has created a severe demand for nursing home beds, as hospitals scramble to get rid of their chronically ill patients and families are not ready to accept them. In late August 1983 the Ministry of Health and Welfare announced a plan to create a model nursing home in each prefecture, which it was hoped would function to keep standards of care high. But because of a shortage of skilled personnel and space, the job of filling the need for long-term institutional care will be immense.
Health Care Costs at the Local Level
National policy charges so-called primary local authorities with the work of implementing the health insurance programs. These 3,255 local care 94systems are not uniform. Many communities have access to nursing homes (there are a total of 1,311 in the country); most have medical screening programs; some have home health services. Currently eighty-one local authorities offer day-care programs. The provision of “respite” nursing home beds for periods up to seven days, to relieve families of homebound, bedfast elderly, began in 1978. By 1983 an estimated 28,000 families had participated in this program. As we will see later when we discuss family care, this is one of the most urgently needed services and it is still seriously underdeveloped. I will not describe the variety of local care, but I can give some idea of its flavor by describing two programs that are attracting national attention and, if they succeed, are likely to influence the development of services in other areas. These programs are in Musashino, a suburb of Tokyo, and Sawauchi Mura, a farming village in Iwate prefecture.
Musashino: Resource Management
Musashino is a high-income commuter town of 133,000 people in the Tokyo megalopolitan area. The aged population there is about the national average of 9 percent, or 13,000 people. Three unusual features of the geriatric care system in Musashino have given the city national visibility.
First, the City Medical Association decided against offering the usual mass health screenings, with their usual 20 percent response rate, to the elderly. Instead, in 1971 it began individual screenings in physicians’ offices, which resulted in response rates above 50 percent (Yamate 1983). This innovation was made possible by two unusual facts. One, Musashino is relatively rich in physicians, having 2.7 per 1,000 population, over twice the national average (Keizai Keikaku Chōhen 1982, 103). Two, the medical association had the foresight, in 1968, to arrange for use of the business computer of the Fuji Bank for billing services, which made the mass handling of individual health data much easier. This procedure was an important innovation in controlling costs.
A second unusual feature of the city’s geriatric care system, begun in April 1981, is the coordination of voluntary and municipal organizations to provide in-home care for the ill elderly. The city welfare office employs five home helpers and four home health nurses, and also refers callers to services provided by the police and fire departments, the Red Cross, and several other volunteer agencies that provide meals and friendly visitors and perform chores. Elders in the community may receive for a reasonable 95 cost at home meals, nursing care, rehabilitation, visitors, help in homemaking and chores, and transportation. Destitute families receive these services free. In addition, the city operates a community center where the elderly may receive day-care and rehabilitation and where beds are available so that homebound elderly can stay for a few days while their regular caretakers rest.
The third noteworthy feature of the Musashino system is a city-subsidized public corporation that offers health care mortgages. Elderly clients who cannot pay for services but who own property can float mortgages at 5 percent interest and draw upon the money to pay health costs not covered by insurance, including home help, bathing, transportation, meals, rehabilitation, and a variety of other services.
The avowed goal of the screening, home care, and community center programs is to keep health costs down by keeping people out of hospitals. The question is, how well is it working? There are many problems, of which outreach is one. In August of 1983 only 145 people were using the in-home and day-care services in Musashino, a mere 1 percent of the elderly. Since nationwide the rate of serious chronic illness among the elderly seems to be around 12.5 percent and total disability around 4 percent (N. Maeda 1983a), the degree of success appears to be limited. Moreover, as word about these programs has spread to other communities in the Tokyo area, chronically ill people have moved to Musashino in order to make use of them. This circumstance is what might be called one of the costs of living in an information-rich society. It will probably be several years before the financial soundness, or lack of it, of the Musashino plan is well enough established to warrant testing in other localities. Meanwhile, in 1983 Musashino’s new mayor seemed determined to reverse what many saw as the socialist policies of the former city government.
Sawauchi Mura: Resource Creation
Sawauchi Mura is a farming town of about five thousand people spread out along twenty-six kilometers of road in the mountains an hour west of Morioka city in the northern prefecture of Iwate. On the whole, it is a nonaffluent, remote, cold place to live. In the 1950s the village had its share of health problems, like most rural villages in the area. Infant mortality rates averaged about fifty per thousand live births, well above the national average, and the population over age sixty-five ran about 5 percent of the total, far below the national average. By 1983 the village had 96listed its health accomplishments in a published pamphlet titled The Village of Nature and Health. Indeed, by the late 1970s the infant mortality rate had fallen to about ten per thousand, and the proportion of elderly had tripled to about 15 percent, one of the highest rates in Iwate prefecture. Even more amazing was that health care expenditures per person in the over-seventy age bracket had dropped to less than half the national average, and just over one-third the average of nearby Morioka city (N. Maeda 1983b).
What had happened? In 1957 an extremely energetic and idealistic man named Fukazawa Masao was elected mayor of Sawauchi. Among his goals was the correction of Sawauchi’s health problems. He realized this would take a grass-roots effort, since outside money would be hard to come by. In 1958 he established a pension for villagers over seventy years of age. Two years later he established a policy, financed by local taxes, of making supplementary payments to national health insurance claims for children and old people. This policy made their health care essentially free, constituting a comprehensive, prepaid medical plan for the high-risk members of the village (N. Maeda 1983b). Soon afterward other municipalities also adopted this policy of rōjin iryō muryōka.
Fukazawa died in 1965, only seven years after taking office; but he had touched off a process that has continued to gain momentum. In 1983, under a new mayor, Sawauchi was receiving daily out-of-town health professionals, planners, and scholars seeking a better understanding of what the village had achieved. At that time Sawauchi had its own health center with forty-six beds and a daily outpatient load of 178. Health screening of the elderly was aggressive. All village residents were periodically scheduled for two days of combined testing and health education at the clinic, in groups of six to eight. Participation in these screenings was running about 60 percent for males and higher for women. Mass screenings for high blood pressure and cancer, I was told, were reaching 80 to 90 percent of the elderly (although I noticed that only about half the eligible participants showed up for a screening at which I was present). All village residents were being encouraged to drop in to the health center for an interview with a nurse whenever they liked, whether seriously ill or not, and staff members were trained to make them feel comfortable. Public health nurses were making calls on bedfast patients at home, at the same time collecting health information on others in the household and disseminating health data. Several of the twelve buraku (residential subdivisions) of the village had volunteer visitor groups to check on the sick and report to the health center. Clinic 97nurses made routine stops at the homes of patients on their way home from work to drop off medicine and collect current health information. As of 1983, there were several self-help groups (for example, for stroke patients, diabetics, and for families of psychiatric patients). In addition to lay social workers (minsei-iin), each buraku had a team of lay health workers (hoken-iin), elected by the residents. The role of the hoken-iin includes getting people to come to the health screenings, reporting health hazards in their neighborhood, and counseling residents on the use of the village health system.
As one may infer from the energy that Sawauchi expends on health care, its leaders seem to have succeeded in making health a subject of everyday thought for most of the villagers. They have become aware of their own previously unexamined attitudes and behavior with respect to health and illness; and they have likewise become aware of their neighbors’ attitudes. In this atmosphere, self-ignorance, self-neglect, and self-abuse become visible forms of deviance and are subject to much the same social pressures that might control laziness, wife beating, and other socially undesirable tendencies. The smallness, homogeneity, stability, and traditionalism of the village have been turned into resources for the control of illness and the minimizing of health care costs. There are echoes here of the kind of ideological groupthink that has been described in some rural religious “utopias” (Plath 1966, 1969), to be sure, but there also are major differences. One difference is that Sawauchi is not addressing an eccentrically personal spiritual vision, but a problem that is increasingly front-page news, not only in Japan but throughout the world. As a result, one gets the feeling that the achievement of concrete goals takes precedence over pious attitudes or conformity for its own sake, although the latter are also important at times.
Many aspects of Sawauchi’s system are being studied and adopted by other communities in Japan, but it is difficult to predict how they will fare elsewhere. Many Sawauchi residents seem to identify themselves closely with their community and with the goals set by its now semilegendary leader, Fukazawa. Their loyalty to their health care system is evident.1
Stress in Families
We now turn from the measured, tabulated, and published costs of geriatric care to the largely unmeasureable and invisible costs: stress in families of the chronically and terminally ill. There can be no doubt about 98the importance of assessing these costs. The very difficulty of measuring them results in the false images of robust social justice and enviable wealth that are invoked by statistics on increasing longevity.
To begin with, there is the question of numbers. How many chronically ill or bedfast elderly are cared for at home? In contrast with European countries and the United States, it is still the expectation of Japanese policymakers and the public that the dependent elderly will be cared for at home by their families. Based on the number of those diagnosed chronically ill with typical diseases of the elderly and the number of elderly living with their families (JICWELS 1983; Keizai Kikaku Chōhen 1982; N. Maeda 1983a), I estimate there are about 1.3 million cases of geriatric chronic illness represented among families with an elderly member. About 438,000 of these elderly are bedfast, and of the bedfast, 307,000 live with their families (D. Maeda 1983). Seventy-four percent of the bedfast have been incapacitated for more than six months (Soda and Miura 1982).
When co-residence with the family is impossible, a variety of institutions is available for the dependent elderly that correspond roughly to our institutions—residential, intermediate, and skilled nursing facilities. These are subsidized by the government under the 1963 Welfare of the Elderly Law. Aside from the relatively small number of these institutions, there is a major difference between Japan and the West in the way they are used. In the West, we have a “pull” model of institutionalization: the patient needs a certain kind of care, and the services of the institution are sought to fill these needs. In Japan, by contrast, a “push” model is more usual: the family cannot care for the patient, usually for economic or logistic reasons, so he or she must go somewhere. This difference is illustrated by the key role of the physician in the decision to institutionalize in the West, and, in this matter, his relative unimportance in Japan, where referral and admission to long-term care is often arranged by social workers without the participation of a physician. The assumption seems to be that for anything short of acute hospital care, family care is ipso facto best, unless the family is physically or economically unable to give care at all. This view, plus the fact that the rate of long-term institutionalization in Japan is 1.6 percent of those over sixty-five (versus 5 percent in the United States), reveals a set of Japanese norms and social conditions that say, “Thou shalt care for thy dependent elderly relatives.”
Self-help groups are available in most major metropolitan areas for 99most serious chronic illnesses. Family members of demented elderly, for example, have a national association with twenty-one branches and about a thousand members, the great majority of whom are in the Tokyo, Kyoto, and Osaka areas. Members of this association hold monthly meetings, during which they hear lectures on matters of care of the aged and offer moral support to one another. The association is similar to the Alzheimer’s Disease and Related Disorders Association (ADRDA) in the United States, with two major predictable differences: first, the Japanese association includes families of those with theoretically treatable dementias; and second, it seems to pay little attention to diagnosis or rehabilitation. The greater availability of self-help groups in the urban area may reflect the relative need for volunteer help in those areas where work takes family members away from the home more often. One study (Otani et al. 1983) found that rural families are better able to support the elderly ill at home and that, unexpectedly, community services for the bedfast elderly are more available in some rural areas.
Who are the caretakers of the dependent elderly? Various studies (Nakajima, Saito, and Tsukihashi 1982; Shimizu 1982; D. Maeda 1983) show that the largest category of caretakers for elderly men is their wives, and for women, it is daughters-in-law. Fewer than 10 percent of caretakers are men. A fourth of all caretakers are over the age of sixty (D. Maeda 1983). In the study conducted by Nakajima, Saito, and Tsukihashi, 63 percent were over age fifty.
While it is impossible to make firm generalizations on the degree of stress suffered by families of the elderly ill, in a study reported by D. Maeda (1983), well over half the families caring for the elderly with a wide range of disabilities characterized their situation as “very difficult.” Nakajima, Saito, and Tsukihashi’s (1982) subjects were members of a self-help society dealing with a relatively high-stress illness (dementia), and it is probably safe to assume that their stress level is higher than average. Ninety-two percent of the caretakers said they felt some distress in their roles; 54 percent rated their stress as acute; and 50 percent said caretaking was a round-the-clock job. Feelings of caretakers toward their role are of special interest. In the Nakajima, Saito, and Tsukihashi study, 77 percent of the caretakers said they wanted to continue; but of these, about a fifth said they did not see how they could. Another 22 percent of the sample did not want to continue their role but saw no way out of it. The more time-consuming the caretaking, the less inclined people were to want to quit. The older the caretakers were, the less likely they were to 100feel their service was a sacrifice. On the whole, the picture one gets from these data is supported by conversations with family members of ill elderly persons. The circumstances do not seem very different from those in the United States. Most caretakers are willing to take on the responsibilities, but they are often frustrated by conflicting demands such as those of child rearing and occupational work and by the lack of helpful resources outside the family. Older people and those with fewer conflicting demands seem most committed to the caretaker role.
The use of, and desire for, outside help is another measure of the stress associated with the caretaker role. Nakajima, Saito, and Tsukihashi (1982) found a considerable unfilled need in this respect, as did Shimizu (1982) and Otani and his colleagues (1983). For example, only 3 percent of the Nakajima, Saito, and Tsukihashi sample had access to respite care, while 33.6 percent felt a need for it. Only 1.6 percent had access to day-care, while 20 percent wanted this service. The magnitude of this problem can be appreciated, however, only when the level of tolerance for stress is understood. D. Maeda’s study (1983, 582) found that “less than half of the families who were judged as needing home help service stated that they wanted to use that service.” The most frequently used service, telephone consultation, was used by only 13 percent of the Nakajima, Saito, and Tsukihashi sample. In another study, Nakajima (personal communication 1983) found that the most frequent problem of people calling for help with a demented patient was the need for a diagnosis of the problem. In fact, 43 percent of 145 callers had been unable to get any diagnosis at all. (An interesting footnote to this study was that many calls came from patients’ daughters, who were not the primary caretakers, probably because daughters are often key decision makers for the elderly parents even when they do not live in the same household.)
The Japanese health care system appears to leave a great deal of responsibility for care to the family. This care is often extremely onerous, but most caretakers accept it as their role, either out of personal conviction or as a result of community pressure. What most family caretakers seem to want first is the comfort and well-being of the parent; after that, they would like knowledge about the likely course of the illness, followed by the desire for occasional relief from the strain of caretaking, and finally, rehabilitative treatment for the parent. The development of outside services for the caretaker families lags well behind provisions for their need for information and respite. Rehabilitative treatment programs are even farther off. 101
Culture and the “Ugly Decline”
Up to this point I have been describing the demographic and economic problem of a medically created geriatric population and recent attempts of Japanese society to deal with that problem through the instrument of public policy. But the problem, of course, is not merely a demographic and economic one. We are talking about the suffering of those who are ill and the injustice of the fact that some of them are well cared for by family and have ready access to professional help while others do not. The ideas of “suffering” and “injustice” are in part culturally defined. Finding acceptable solutions to such problems means finding solutions that make sense given the cultural norms that pertain to the comfort, dignity, and civil rights of the aged. Clearly, just enabling more people to live longer under any circumstances is not an acceptable use of medical technology in Japan or any other society. The “ugly decline” is ugly because it violates cultural norms, and ugliness on such a large scale is not acceptable. The question to which I now turn is what is ugly about the lives of the medically dependent aged from the Japanese point of view, and how does this point of view affect policy regarding geriatric health care?
A major difference between Japanese and Western models of geriatric care is that hospitalized elderly in Japan remain in hospital much longer than those in the West, and there are fewer facilities for the care or rehabilitation of the chronically ill elderly. In 1977 a grand total of 7,251 old people were getting any kind of rehabilitation, less than 3 percent of the total number of bedfast elderly (Prime Minister’s Office 1980, 194). Is there anything cultural about these facts, aside from the obvious conclusion that the Japanese still allocate to the family many responsibilities we Westerners have come to see as public?
Let us first look at some economic conditions and historical facts. The long hospital stays and the lack of long-term care beds are obviously related. Until nursing homes are built, severely and chronically ill people have to live somewhere in a society that keeps them alive artificially. Since World War II the cost of land and construction in Japan has been extremely high, pushing upward the cost of building nursing homes. This condition does not explain much, however, because care in nursing homes is still cheaper than in hospitals, even when current building costs are figured in. There is also the problem of politics. The method of reimbursing nursing homes for patient care cost is the subject of debate 102between the Liberal Democrats (who want to charge families on a sliding scale) and the opposition parties, who want the services to be covered by welfare. This debate tends to delay the development of the industry. Another political problem, mentioned in Long’s chapter in this volume, is the relatively great power of the Japan Medical Association and the unwillingness of physicians to transfer authority to other helping professions. Nursing home care, home care, and day-care will only work in societies where there is a good supply of well-trained nurses and health paraprofessionals, and this supply can only develop where the work of these professionals is encouraged and legitimized by those in power.
Historical associations fuel the political debate and lend an unfortunate symbolism to nursing homes. There is a historical connection between modern nursing homes and their predecessor institutions, the yōrō in, which were mainly poor houses not medical facilities. The opposition parties argue that no one should have to pay to enter a poor house. Many people associate nursing homes with the shame of poverty, although the skilled nursing facilities are open to middle-class families. Again, this fact doesn’t explain why many middle-class people do place their parents in nursing homes or why Japan’s nursing homes offer rehabilitation to only 4.4 percent of their patients (Prime Minister’s Office 1980, 194).
Still another historical factor is the double structure of the hospital industry. About a sixth of Japan’s acute care beds are in small private clinics with fewer than twenty beds each (JICWELS 1983). Here, the hospitalizing physician stands to gain personally by keeping the beds filled, much like the physician-owners of many U.S. proprietary nursing homes. But even if stays in these hospitals are unusually long (no precise data on this matter are available), one-sixth is not a large proportion, implying that economic conditions of the small private clinics cannot be the only influencing factor. The government’s preferred explanation for long stays is that people overuse hospitals because they are free. This would be convincing only if many people preferred hospitalization to other living arrangements, which I do not think is the case.
The lack of rehabilitation services might be explained simply by a lack of financial incentives to develop them. As long as the medical professionals are making money, perhaps they do not perceive a problem in this area. However, long hospital stays definitely are a problem for the government, the taxpayers, and the disabled elderly themselves. Other so-called aging societies like England, Sweden, and Holland have made 103great strides in rehabilitation medicine due largely to economic incentives. If the incentive argument is to be convincing, we must be able to see evidence that either the medical establishment is disproportionately powerful in Japan or that there are cultural barriers to thinking about rehabilitation at the policy level.
Let us turn, then, to the Japanese cultural factors that give low priority to rehabilitation. These factors must be sought systematically in the way people treat old age, chronic illness, and health care. Let me cite some pertinent facts and observations.
- There are admirable transportation aids and rehabilitation centers for the ambulatory and the independently living impaired. They are not a “neglected” minority.
- On the geriatric care circuit, one hears over and over a word that has almost disappeared in the West—the word “bedridden” (netakiri)—used as though it were a permanent condition.
- One often sees the stroke patient, the most frequent example of netakiri, being lovingly fed, massaged, and talked to, but wasting away in the hospital or in the sickroom bed at home.
- At the showing of a film on dementia, one viewer, herself the wife of a stroke patient, said, “I didn’t like the way the nurse was pushing the old lady to ‘do this,’ and ‘do that.’ If they don’t naturally want to be healthy again, pushing them won’t change things.”
- When one asks members of the rural old folks’ club what their biggest worry is, someone says, “That we should become netakiri,” and others nod.
- The splendid new residential homes for the aged that are sprouting up everywhere lack facilities for rehabilitation, or even plans for adding them. The advertisements for one planned facility in Kobe show a schedule of pro-rated refunds if the buyer gets chronically sick during the first ten years of residence. It is evidently expected that chronic illness means, naturally, that he would have to leave. The builders of these facilities have studied the Danish and British and Dutch models, but they have rejected the concept of a continuum-of-care.
Much has been written about Japanese norms for expressing and gratifying dependence needs (Caudill 1962; Doi 1973; Lebra 1976; Reynolds 1976). I might summarize these writings by saying that there are several well-developed role sets in the culture that encourage passive helplessness 104by one partner and active nurturing by the other, and that sickness and caretaking are one such role set. The caretaker is actively solicitous of the patient’s emotional as well as physical needs. This circumstance is somewhat different from the American/Northwest European tradition, wherein the patient feels a strong aversion to his own passivity and presumably feels better emotionally through the simple process of becoming more active and mobile (Strauss 1975; Zborowski 1969).
This Japanese role set is expressed also in Japanese and other East Asian forms of treatment. Illness is felt to be a problem of imbalance between the individual and his environment, an abnormality in the flow of energy (Caudill 1976). In contrast with the aggressive methods of Western medicine, where treatment often adds considerably to the patient’s discomfort, Eastern methods aim more at adjusting the relationship between the patient and his environment and are more likely to be gentle and nonintrusive. If possible, they should even be pleasant, and they are likely to involve the diligent work of nurturant healing figures over long periods. This is true of herbalism and many forms of acupuncture, moxibustion, massage, and the Japanese psychotherapies (Lock 1980; Reynolds 1980). The best parallel in Western medicine is analytically based psychotherapy, the one form of treatment where the fostering of dependence is felt to be an important, if temporary, part of the cure.
Disability, as Sigerist (1932) pointed out, is an anomaly in Western civilization because the patient cannot get well and thereby violates the patient-healer role set. By contrast, rehabilitation of the bedfast is an anomaly in Japanese culture because it often requires the caretaker to violate the emotional terms of the role set. Rehabilitation requires the imposition of discomfort on the patient, and on some extent the patient’s rejection of nurturing by the caregiver. Moreover, this anomaly is especially marked in cases where the caregiver and the patient are members of the same family. The professional caregiver role more often includes a mandate to impose discomfort when scientific knowledge indicates that a therapeutic result cannot otherwise be achieved.
This cultural promotion of dependency applies to people of all ages. It becomes a problem in the case of the aged because their health problems tend to be multiple and their capacity to recover is impaired. They take longer to recover, and they tend to recover less function than young people. To take a simple example, compare a 30-year-old and a 75-year-old who have fallen and broken a leg. (Falls are a leading cause of hospitalization in people over age sixty-five.) The young person will probably 105recover near-total functioning in a few weeks with little or no rehabilitation therapy. The old person, however, may never recover 100 percent of functioning because of poor healing. She is also likely to have balance problems due to loss of central nervous system function, and/or arthritis, and/or vision impairment, and/or drug-related disorientation. Her recovery is likely to take practice, muscle development, and training in the use of a walker or cane. She may not be able to return to her former home without modification of steps and walkways and appliances, and in her impaired condition she is likely to fear walking alone. Overcoming all these barriers to independence will require courage and determination on the patient’s part. She is likely to lapse into depression, which, in turn, must be treated.
In a culture like that of the United States or England, where full autonomy is considered a right and an obligation that is only temporarily affected by illness, motivation to carry out this stressful process will be high for both the therapist and the patient. In a culture lacking this view of human relations, motivation may not always be up to the task.
At first glance this interpretation seems to conflict with other evidence that suggests that helpless dependency is an unpleasant experience for the aged and for their caretakers alike. Plath (1972), for example, describes the “pokkuri jinja‚” shrines where old people go to pray for a speedy death. And there is the well-known “Obaasute-yama” (“Granny-flinging Mountain”) legend, in which a family takes a healthy but superannuated grandmother to a lonely mountain crag and abandons her. I do not think these bits of tradition pose a problem for the interpretation I am suggesting. For one thing, as Plath (1972) has noted, such traditions speak of the deep ambivalence with which aging and the aged are regarded in any society. Customs and other norms often make people miserable, and they are often used to justify antisocial impulses as well. Passivity or nurturing can be just as unpleasant in a passivity-fostering culture as in a passivity-fearing one when one is not in the mood to be passive or nurturant. Both old people and their children fear illness more in a culture like that of Japan, which does not customarily offer them the choice of striving for independence or of not doing so.
In short, old people tend to stay in Japanese hospitals for a long time partly because very little effort is made to get them up and out. This lack of effort stems partly from the fact that rehabilitation conflicts with the caretaker’s mandate to give emotional succor and the patient’s mandate to passively receive it. The strength of these cultural prescriptions in a society still as homogenous and as public as Japan’s is gives a characteristic 106 expression to the fears surrounding the chronic illness of old age. Understanding norms that govern the relationships of parent and child, caretaker and patient, helps us to explain why the Japanese search for solutions to the technologically created “ugly decline” has taken the path I have described. Culturally, ugliness in this case is defined not as Western culture defines it, namely, the loss of control over one’s own fate; rather, what is ugly is the prolonged activation of obligatory roles wherein the caretaker must give succor in heroic measure and the patient must passively receive it.
Gerontologist Daisaku Maeda concludes a recent article on care of the elderly with a concise statement of the outlook for the near future in Japan.
The family is, and will continue to be, the most important source of support for the elderly in Japan. In the future, however, the relative importance of family support of the elderly will inevitably decrease because (1) the proportion and real number of frail and impaired older people who are no longer independent in their daily living will greatly increase and (2) the capability of families to care for older parents will decrease due to industrialization and urbanization. Therefore, various social services for the frail and impaired elderly and support services for the families who care for them will undoubtedly have to be expanded. (D. Maeda 1983, 583)
This obviously implies a further turn of the screw, escalating public responsibility and public cost in an effort to compensate for the unwanted effects of technological progress. We might deplore this if there were any alternative in sight, but there is not; it is fundamental to the process of economic development in which all advanced nations now find themselves. But we can ask what negative effects this coming escalation is likely to have on the quality of life. Will it further disfigure the image of old age and death, and if so, how? There are likely to be both gains and losses. On the negative side, the lives of many severely ill and helpless old people will be prolonged by the creation of professional services to care for them. This is the very situation that wedded the image of old age to the spectre of medical dependency in the first place. It is unlikely that the new nursing homes and family support programs will include vigorous attempts to rehabilitate the chronically ill, for reasons I have discussed. Such attempts, if undertaken, may shorten the period of 107helplessness and thereby improve the quality of late life. A second negative effect of the coming changes is a likely reduction in the quality of life for many of the growing population of elderly who will spend months or years in nursing homes. Even the best nursing home can scarcely offer the variety and flexibility of care or the familiar and personally meaningful surroundings of the many private homes from which its patients have ultimately come, and to which most of them long to return.
On the positive side, much can be said as well. Most important, services to families will allow more ill elderly to remain in familiar surroundings and at the same time reduce the suffering of many family caretakers. Second, the development of nursing homes now, with our current medical, psychological, and social knowledge of chronic illness, offers hope that patients will receive more humane and better-informed care than has been offered up to now in geriatric hospitals. Many current hospital wards for the elderly have grown out of urgent necessity, without adequate planning. Yet another possible benefit of the future is that it will require the development of new and better approaches to the care of the chronically ill. Some European countries, notably Great Britain, the Netherlands, and Sweden, are developing a team approach to geriatric care. In this approach physicians share responsibility with other experts whose job is to minimize medical dependency—physical and occupational therapists, nutritionists, nurses, and social workers. This appears to be an economical and humane alternative to high-technology, hospital-based medicine. If the team approach is used properly, it can promote independence and free choice among the elderly by keeping them out of institutions and off drugs and by helping them and their families to cope with their disabilities.
The basic conditions of industrial civilization have added permanently to the human life-cycle a prolonged period of decline. Too often that decline is “ugly” because we have been too busy postponing death to confront the quality of life that results from our efforts. So far, Japan is no exception.
Data for this report were collected chiefly during the month of August, 1983, in Japan. Whatever worthwhile results that month produced I owe to the extraordinary kindness and impressive knowledge of Professor Maeda Nobuo, Head, Section of Social Security, Institute of Public Health, Tokyo; to Dr. Saito Kazuko, Head, Section on Aging, National Institute of Mental Health, Ichikawa; and to Kinoshita Yasuhito, who recently completed his Ph.D. in Human Development 108and Aging, UCSF, and to the dozens of health care workers, city officials, and elderly patients they introduced me to.
1. The following example shows the loyalty of villagers to the system. Central to the operation of the care system of the village is the fact that the staff members of the health center know all the patients personally. This personal knowledge assures continuity and coordination of services that (as other local systems show) would otherwise become very fragmented. Building up personal knowledge of the clients, in turn, requires very low rates of turnover among health center staff members. The two nurses presently working in the ambulatory care center both grew up in Sawauchi, and both have worked there since they left nursing school. When I asked the director of operations of the center the secret of such loyalty, he said proudly, “The philosophy established by Mr. Fukazawa twenty-six years ago is still almost unchanged. It has continued to develop and spread.”
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