NOBUO MAEDAAND SEIICHITAKAHASHI
P R O V I S I O N OF C A R E T O T H E T E R M I N A L I L L I N T H E H O M E : COMMUNITY EXPERIENCES IN JAPAN
ABSTRACT. An analysis of the costs of terminal care in Japan revealed that the last month of life accounted for almost one-third of the costs incurred by patients during the entire preceding 10 months. In order to reduce the costs of terminal care and raise the level of care provided in the community two groups, an urban group led by Dr. Sato and a rural group led by Dr. Asai, developed innovative approaches for providing community care to terminal cancer (and other) patients. Three case studies illustrate the way the terminal stages of illness are managed under these new approaches. The authors conclude by proposing several reforms to improve the delivery of care to the terminally ill. Key Words: case management, terminal care, home health care, Japan
INTRODUCTION Of all the developed countries Japan is most rapidly becoming an 'aged' society. In 1960 the proportion of the population over 65 was 5.7%. By 1980 it had reached 9.1%, and by 1990, 12%. Population projections indicate that by the year 2000 it will reach 16.9% (Japan Aging Research Center 1991:10-11). The number of people who desire to end their lives in their homes is increasing with the aging of Japan. However, both the Japanese family setting and the place of dying are changing greatly. The increase in the proportion of nuclear families and in the number of caregivers who are themselves elderly lessens the capacity of the family to provide support for the terminally ill. The growing demands on senior physicians delivering primary care are also reducing their ability to attend the terminally ill in their homes. Policymakers and providers in the health care fields must become aware of the new trends in Japan in order to provide appropriate care to the terminally ill and, especially, to provide support for informal care and long term care of the terminally ill in their homes. Below we describe the general features of contemporary community care for dying people in Japan as well as some of the innovative programs in both urban and rural areas. After these descriptions, we will summarize the main issues and propose reforms for the delivery of care to the dying in Japan. OVERVIEW OF CARE AND COSTS FOR THE TERMINALLY ILL As in other countries, the dying in Japanese society were traditionally taken care of by their family members in their own homes. Older people, in particular, were supported by their children or daughters-in-law. Until 20 years ago most people had observed the dying of a family member in their home and experienced the grief of losing a close family member. By 1990, however, 75.1% of the population were ending their days in hospitals or nursing homes. This figure Journal of' Cross-Cultural Gerontology 8. 439446, 1993. 9 1993 Kluwer Academic Publishers. Printed in the Netherlands.
440
NOBUOMAEDAAND SEIICHITAKAHASHI
represents a doubling since 1980 when only 38% died in hospitals or nursing homes. Hospitals especially are becoming common sites of dying and sometimes at the request of the family. Even though we still think of hospitals principally as places for diagnostic examination, treatment, and rehabilitation, generally speaking, families are now inclined to send seriously ill and incurable family members to hospitals. Unlike most of the hospitals in the United States, Japanese institutions generally keep patients until they either recover or die; as a result, the dying occupy a higher and higher proportion of the beds. A major factor on the supply side in the higher utilization of hospital beds by the terminally ill is the economic incentive for hospital earnings. The provision of social health insurance in Japan is based upon national legislation, while private insurance is quite rare except, for example, for special amenity beds for cancer patients. Medical services provided to insurees are paid for on a fee-for-service basis according to a nationally determined schedule. Therefore, on the one hand, hospitals can obtain higher payments from insurance organizations for performing more examinations and administering more treatments, injections, medications, and other services. On the other hand, physicians and nurses making house calls and providers of home health service can not receive proper reimbursements even though the services they provide consume a great amount of time and energy. We examined national data on the monthly per capita costs of patients during their last 10 months of life and found that costs incurred during the last month of life accounted for one-third of the total costs paid to the hospital or clinic over the 10 month period (Maeda 1989). Data from Takasu, a town of 7,000, reveal the same pattern but even more strikingly. Figure 1 shows that a dying patient spent almost $300 per day in his last month in the hospital whereas more than 6 months prior to death, his hospitalization costs averaged under $50 per day including the copayment for hospitalization (people 70 yeras or older are charged a copayment of $3 per day) as well as ambulatory care. Thus, we can see that there is a very big difference in hospital costs between the 6 months prior to death and the final month. Japanese hospitals, especially private hospitals, tend to give many injections and medications to terminal patients to prolong their limited lives and increase their own profits. Within Japan we could see different patterns among prefectures; for example, the inhabitants of some prefectures avoid hospitalization even for terminal illnesses, preferring instead to die in their own homes. In Niigata and Nagano prefectures in central Japan, 40% of people remain in their homes until death whereas in Hokkaido in northern Japan only 10% do so. Most of these home deaths occur in rural areas in central Japan where many people still live in extended families of three generations. While the younger generation has generally left the countryside for the city, the spouses in the migrant generation nevertheless assume the role of caregiver for dying elderly family members as a natural aspect of their role in the family.
PROVISIONOF CARETO THE TERMINALILL IN THE HOME
44 l
N=74 $300 250 200
]llr IIF iii
50 100 5 I I~,~
3t 29
i TM I i
I
25 L>~21 19 1; Y~ 13 Months Before )eath
lIll?lr, Y~ Jg' 'TJ ''5 '3' '1
Fig. 1. Hospital cost of terminal patients in Takasu, Hokkaido, Japan per person per day. INNOVATIVE PROGRAMS OF COMMUNITY CARE FOR THE TERMINALLY ILL Tokyo: The Life Care System
Even though Japan is rapidly becoming an aged society, some families with elderly do wish to support them in the terminal stages of their illnesses. In urban areas nuclear families predominate, and spouses and children are losing their capabilities to care for aged family members. However, by organizing new support systems, we can help the aged to live out their lives as far as possible in accordance with their wishes. The Life Care System (LCS) is an innovative program in Metropolitan Tokyo that attempts to keep the terminally ill in their homes. The program was developed by Dr. Akira Sato, who himself had earlier received home health care for his mod~er-in-law during her terminal stage. Twenty years ago, appreciating the importance of this kind of help, Dr. Sato, then the director of a community hospital in a suburb of Tokyo, promoted a program of visiting nursing for bedridden elderly. In the course of operating this program he quickly came to realize that there was a great demand for home health care for the terminally ill. In 1980 to help meet this demand Dr. Sato created LCS, a membership group to which home health care and visiting services are provided at low cost. LCS is a non-profit private health care organization to which members pay a monthly fee of $50 (originally $40). In return for this membership payment, people can obtain emergency home nursing and a call by a physician. Ordinary and general medical care in clinics and hospitals is provided for all members under the existing universal social health insurance in Japan. But this health insurance does not always supply home visiting, house calls, or emer-
442
NOBUO MAEDAAND SEIICHITAKAHASHI
gency visits. Dr. Sato and his associates established a system of round the clock care that would provide comprehensive continuing care to patients in their homes. Member patients with special needs or preferences are admitted to an affiliated hospital, The demands of the program on Dr. Sato are considerable. He carries a beeper at all times so that he can answer urgent calls from the members and must avoid the subway as his beeper does not work there. The requests for visits and beeper messages from members of LCS were stable from 1980 to 1989 - averaging 10 to 20 a month. In essence LCS is similar to social health maintenance orgnaizations that charge members a capitation fee. In 1991 the number of staff was increased greatly to 5 physicians, 6 nurses, and 5 office workers. LCS is expanding members' participation in the decision-making process, and public support for the program has been growing in the wake of the new system of payment by social health insurance for home nursing and terminal palliative care for cancer patients. At present LCS covers almost 900 members and has received a great deal of positive publicity on television and in the mass media for its unique and innovative system for supporting terminal patients in their own homes. Participants in LCS may spend their last weeks in their homes if they prefer to stay there. For example, from October 1980 through August 1987, 58% of cancer patients in the program died in their homes. Most, by the way, are told that they have a terminal condition, an unusual experience given the normal practice in Japan to avoid disclosure of this diagnosis.
Community Care for the Terminally Ill in Takasu, Hokkaido In urban areas team work by many professionals is enhancing the quality of life in the terminal period. System reforms based upon community needs for long term care and tearninal care are crucial issues in cities where plenty of social resources exist and compete with each other. In la~ral areas, however, community support is still rather limited. The community physician as a general practitioner is able to visit patients' homes and to consult with family members. Most of the people in rural communities know each other and are familiar with the background of each family. The tradition of care for the elderly and terminally ill is continuing in most farm households not only because of the shortage of hospital beds but also because the family structure allows them to help support the sick in their homes. Even with the reduction in agricultural manpower, older farmers and the self-employed want, so far as possible, to take care of dying relatives in their homes in accordance with the patients' wishes. These rural dwellers remember the deaths of their grandparents many years ago, and they are sensitive to the fact that most of the elderly and other patients have little taste for the great changes in daily life they would face in a hospital. In the small town of Takasu, a suburb of the northern city of Sapporo, a family practitioner named Dr. Asai, the town's only family doctor, is working in a private community clinic to fulfill the wishes of people to stay at home as long as possible. Historically in Takasu town, the town officers, public health nurses,
PROVISIONOF CARETO THE TERMINALILL IN THE HOME
443
and Dr. Asai had cooperated informally in providing care to frail elderly in their homes. In 1988 a research group including Dr. Asai, town officers, scholars, and a care manager organized a team to provide case management and to develop a more formal system of community care. Our research group, supported with funds from the Toyota Foundation, has been examining Dr. Asai's efforts to implement the case management approach in this community. Every two weeks the research group directs a case conference at which serious or complicated cases in need of care requiring team coordination are discussed. Five public health nurses and 4 home helpers are employed by the municipality. In addition Takasu town has one nursing home owned and managed by a non-profit private organization with funds from a national grant. The case management conferences are attended by people from the clinic, nursing home, and municipal government as well as by public health nurses, home helpers, social workers, and, of course, Dr. Asai. Given the limited resources in the town, close cooperation among the professions and the care providers is essential. Below we present three examples of individuals whose care was organized by the case management approach. The impact of the type of care they received on the costs of care is given particular attention. The cases were selected to illustrate lowest, average, and highest costs of care among the clients receiving case management. All of the clients had families and caregivers. Mrs. S.N.
Mrs. S.N. died of stomach cancer in her home. Her caregivers were very old and also very busy with the cultivation and management of their rice fields from early morning until late evening. Mrs S.N.'s family wanted to send her to a nursing home in the town, but unfortunately there was no vacancy. They hesitated to send her to a geriatric hospital in the city because of its reputation for keeping the patients in bed and providing a low level of care. Mrs. S.N. herself did not wish to move to the unfamiliar hospital. After several serious discussions with a town welfare worker and the family, Dr. Asai organized the team work necessary to support Mrs. S.N. in her home. A public health nurse, a home helper, a dietician, and a social worker from the town were mobilized to provide services to Mrs. S.N. and her family. The most pressing problems were how to prevent dehydration in the summer time and how to treat the small bedsores that were associated with her bedridden status. The care began in 1988 when the case management system was first being implemented in the town and continued until her death. Mrs. S.N.'s total medical costs borne by social health insurance and including copayments during her last 3 year was extremely low, only $340, mainly for house calls by the physician and some blood tests. The physician did not inform her of her cancer. The progression was slow and did not cause much pain.
444
NOBUO MAEDA AND SEIICHITAKAHASHI
Mrs. EK.
The illness and death of 92 year old Mrs. Y.K. also took an uncomplicated course even though she spent most of her time in bed due to rheumatoid arthritis. In the team conference about her case, team members spoke mostly about the desirability of home visits by a physician. The family members continued to provide skillful care for this strictly bedridden patient around the clock. The total medical costs paid by social health insurance for Mrs. Y.K.'s last 3 years was $5,300. She died quietly in her home in July 1992. Mrs. K.I.
One of our failures in case management occurred with 88 years old Mrs. K.I., who was suffering from irreversible dementia. In 1990 she entered a geriatric hospital because of a hip fracture. Before 1990 while she was regularly participating in a day care program operated in a community nursing home, the care team had worried about her falling or having some minor accident in her home. Once she was hospitalized in the city, she could no longer return home partially because of her illness but also because of the desires of the caregivers who could not support such a heavy burden in the home. The case management groups discussed her care and sought some alternative which would allow her to be discharged from the hospital; however, due to lack of communication, the hospital did not adopt any new approach. The total cost of Mrs. K.I.'s care during the two years since her 1990 admission to the geriatric hospital has amounted to $66,275, mainly in the form of payments to hospitals from social insurance. This sum does not include private payments of $100 monthly to the nursing aide employed by the family. MAIN ISSUES AND PROPOSALS FOR CARE OF THE TERMINALLY ILL By examining several cases of terminal illness in this rural town, we are able to evaluate the impact and importance of the case management approach to care. The credit for the success of this program goes to the chief of the welfare section, to Dr. Asai, and to a social worker at the community nursing home. Home helpers also attended case conferences on request to provide useful information on the situation of the family and the patient. In rural society most families hesitate to ask for formal support to alleviate their heavy burden. We should assist families providing care to patients in their homes by providing appropriate information, new equipment, emergency calls, transportation, and bathing services. In urban areas such as Tokyo the involvement of families with cancer patients is growing through such programs as the LCS. We have to make more effort to facilitate frank communication between the staff and the family regarding collaborative methods of community care that make use of all available resources, including neighbors and volunteers. Below we present several proposals for reform that we feel are essential for the prompt and efficient development of appropriate services for the terminally
PROVISIONOF CARETO THE TERMINALILL IN THE HOME
445
ill in Japan. (1) Primary care for the patient in the community must be strengthened. It is essential that the national health insurance program provide enough payment for physician visits and home health services. Since 1992 the Japanese government has enacted a new payment system for the visiting nursing center, and policymakers are making efforts to increase the payment for physician visits though it remains very low. The visiting nursing center is a special new agency for discharged hospital patients and employs visiting nurses who obtain payment through social health insurance. (2) The Japanese government should find ways to shorten the length of stay in hospitals; currently patient stays average around 40 days in general hospitals. Reducing the number of hospital patients will not only reduce costs but also free nurses and other staff to engage in community activities, such as visiting patients' homes and introducing day care programs for discharged patients. (3) New visiting nursing centers are aimed at developing community care for discharged patients, but at present, there is only one such center in the Sapporo area, theoretically serving a population of 1.7 million in 1993. Cooperation and referrals among hospitals are very limited in Japan, and the need to continue the ongoing reform of the medical system is urgent. (4) As a result of its evaluation of I 1 Pilot Projects of Home Nursing in Japan in 1988, the Japan Nursing Association made several proposals. The nurses recommended more home help services, day care, and respite care. They also believed more integration with community hospitals and health centers was needed to continue proper care for long term patients. Organizing more coordinated services and integrated activities is the responsibility of the municipality. (5) Specifically, at the community level, team work among the nurses, physicians, and home helpers is of the utmost importance for the terminally ill. Since 1989 the Japanese Ministry of Health and Welfare has allocated a budget for the special program coordinating case management for the elderly, but the policy and direction of this program are unclear and remain fragmented among government organizations. (6) In 1990 the Ministry of Health and Welfare set a new fixed payment of $5,770 a month for the terminally ill in hospices. This payment is for cancer inpatients only and includes palliative care. But few hospitals in Japan are actually receiving this payment; most are still very reluctant to participate in palliative care programs. Requesting informed consent of cancer patients is limited to special hospitals. CONCLUSION In conclusion we advocate innovative efforts in the community by the key decision-makers, the mayors and members of municipal assemblies, to develop team work among all of the professionals in the community. It is unnecessary to pay exorbitant costs for hospitalization, especially in the case of the terminally
446
NOBUOMAEDAAND SEIICHITAKAHASHI
ill. Academics and research groups must document the cost-effectiveness and the satisfaction of patients and families who received care in the home. In most countries the age of the pre-eminence of treatment-centered hospitals is over. We need more comprehensive health and social services in an aged society to create supportive homes and families during the final years of life. It is very important to clarify the effectiveness of home care and of case management; however, the number of cases in our study is not sufficient to do this nor did we have a control group with which to compare the case management clients. Our original objective was to establish a case management system in Takasu. Our next objective will be to determine its effectiveness. ACKNOWLEDGEMENTS We thank Dr. Motosuke Asai, Mr. Mitsunobu Shimahata, Mr. Yosio Funahashi and Mr. Kazuaki Shibuya of Takasu-cho for their great assistance and help in collecting the data on terminal care in Takasu. This study was partially supported by a 1991 grant from the Toyota Foundation. REFERENCES Japan Aging Research Center 1991 Aging in Japan. Tokyo: Japan Aging Research Center. Maeda, N. 1989 Long-Term Care for the Elderly in Japan. In Caring for an Aging World, T. Schwab, ed. Pp. 246-264. New York: McGraw-Hill.
Nobuo Maeda Faculty of Medicine Sapporo Medical University S-l, W-1Z Chuo-ku, Sapporo, 060 Japan Seiichi Takahashi Faculty of Economics Sapporo University 3-7 Nishioka, Toyohira-ku, Sapporo 062 Japan
P R O V I S I O N OF C A R E T O T H E T E R M I N A L I L L I N T H E H O M E : COMMUNITY EXPERIENCES IN JAPAN
ABSTRACT. An analysis of the costs of terminal care in Japan revealed that the last month of life accounted for almost one-third of the costs incurred by patients during the entire preceding 10 months. In order to reduce the costs of terminal care and raise the level of care provided in the community two groups, an urban group led by Dr. Sato and a rural group led by Dr. Asai, developed innovative approaches for providing community care to terminal cancer (and other) patients. Three case studies illustrate the way the terminal stages of illness are managed under these new approaches. The authors conclude by proposing several reforms to improve the delivery of care to the terminally ill. Key Words: case management, terminal care, home health care, Japan
INTRODUCTION Of all the developed countries Japan is most rapidly becoming an 'aged' society. In 1960 the proportion of the population over 65 was 5.7%. By 1980 it had reached 9.1%, and by 1990, 12%. Population projections indicate that by the year 2000 it will reach 16.9% (Japan Aging Research Center 1991:10-11). The number of people who desire to end their lives in their homes is increasing with the aging of Japan. However, both the Japanese family setting and the place of dying are changing greatly. The increase in the proportion of nuclear families and in the number of caregivers who are themselves elderly lessens the capacity of the family to provide support for the terminally ill. The growing demands on senior physicians delivering primary care are also reducing their ability to attend the terminally ill in their homes. Policymakers and providers in the health care fields must become aware of the new trends in Japan in order to provide appropriate care to the terminally ill and, especially, to provide support for informal care and long term care of the terminally ill in their homes. Below we describe the general features of contemporary community care for dying people in Japan as well as some of the innovative programs in both urban and rural areas. After these descriptions, we will summarize the main issues and propose reforms for the delivery of care to the dying in Japan. OVERVIEW OF CARE AND COSTS FOR THE TERMINALLY ILL As in other countries, the dying in Japanese society were traditionally taken care of by their family members in their own homes. Older people, in particular, were supported by their children or daughters-in-law. Until 20 years ago most people had observed the dying of a family member in their home and experienced the grief of losing a close family member. By 1990, however, 75.1% of the population were ending their days in hospitals or nursing homes. This figure Journal of' Cross-Cultural Gerontology 8. 439446, 1993. 9 1993 Kluwer Academic Publishers. Printed in the Netherlands.
440
NOBUOMAEDAAND SEIICHITAKAHASHI
represents a doubling since 1980 when only 38% died in hospitals or nursing homes. Hospitals especially are becoming common sites of dying and sometimes at the request of the family. Even though we still think of hospitals principally as places for diagnostic examination, treatment, and rehabilitation, generally speaking, families are now inclined to send seriously ill and incurable family members to hospitals. Unlike most of the hospitals in the United States, Japanese institutions generally keep patients until they either recover or die; as a result, the dying occupy a higher and higher proportion of the beds. A major factor on the supply side in the higher utilization of hospital beds by the terminally ill is the economic incentive for hospital earnings. The provision of social health insurance in Japan is based upon national legislation, while private insurance is quite rare except, for example, for special amenity beds for cancer patients. Medical services provided to insurees are paid for on a fee-for-service basis according to a nationally determined schedule. Therefore, on the one hand, hospitals can obtain higher payments from insurance organizations for performing more examinations and administering more treatments, injections, medications, and other services. On the other hand, physicians and nurses making house calls and providers of home health service can not receive proper reimbursements even though the services they provide consume a great amount of time and energy. We examined national data on the monthly per capita costs of patients during their last 10 months of life and found that costs incurred during the last month of life accounted for one-third of the total costs paid to the hospital or clinic over the 10 month period (Maeda 1989). Data from Takasu, a town of 7,000, reveal the same pattern but even more strikingly. Figure 1 shows that a dying patient spent almost $300 per day in his last month in the hospital whereas more than 6 months prior to death, his hospitalization costs averaged under $50 per day including the copayment for hospitalization (people 70 yeras or older are charged a copayment of $3 per day) as well as ambulatory care. Thus, we can see that there is a very big difference in hospital costs between the 6 months prior to death and the final month. Japanese hospitals, especially private hospitals, tend to give many injections and medications to terminal patients to prolong their limited lives and increase their own profits. Within Japan we could see different patterns among prefectures; for example, the inhabitants of some prefectures avoid hospitalization even for terminal illnesses, preferring instead to die in their own homes. In Niigata and Nagano prefectures in central Japan, 40% of people remain in their homes until death whereas in Hokkaido in northern Japan only 10% do so. Most of these home deaths occur in rural areas in central Japan where many people still live in extended families of three generations. While the younger generation has generally left the countryside for the city, the spouses in the migrant generation nevertheless assume the role of caregiver for dying elderly family members as a natural aspect of their role in the family.
PROVISIONOF CARETO THE TERMINALILL IN THE HOME
44 l
N=74 $300 250 200
]llr IIF iii
50 100 5 I I~,~
3t 29
i TM I i
I
25 L>~21 19 1; Y~ 13 Months Before )eath
lIll?lr, Y~ Jg' 'TJ ''5 '3' '1
Fig. 1. Hospital cost of terminal patients in Takasu, Hokkaido, Japan per person per day. INNOVATIVE PROGRAMS OF COMMUNITY CARE FOR THE TERMINALLY ILL Tokyo: The Life Care System
Even though Japan is rapidly becoming an aged society, some families with elderly do wish to support them in the terminal stages of their illnesses. In urban areas nuclear families predominate, and spouses and children are losing their capabilities to care for aged family members. However, by organizing new support systems, we can help the aged to live out their lives as far as possible in accordance with their wishes. The Life Care System (LCS) is an innovative program in Metropolitan Tokyo that attempts to keep the terminally ill in their homes. The program was developed by Dr. Akira Sato, who himself had earlier received home health care for his mod~er-in-law during her terminal stage. Twenty years ago, appreciating the importance of this kind of help, Dr. Sato, then the director of a community hospital in a suburb of Tokyo, promoted a program of visiting nursing for bedridden elderly. In the course of operating this program he quickly came to realize that there was a great demand for home health care for the terminally ill. In 1980 to help meet this demand Dr. Sato created LCS, a membership group to which home health care and visiting services are provided at low cost. LCS is a non-profit private health care organization to which members pay a monthly fee of $50 (originally $40). In return for this membership payment, people can obtain emergency home nursing and a call by a physician. Ordinary and general medical care in clinics and hospitals is provided for all members under the existing universal social health insurance in Japan. But this health insurance does not always supply home visiting, house calls, or emer-
442
NOBUO MAEDAAND SEIICHITAKAHASHI
gency visits. Dr. Sato and his associates established a system of round the clock care that would provide comprehensive continuing care to patients in their homes. Member patients with special needs or preferences are admitted to an affiliated hospital, The demands of the program on Dr. Sato are considerable. He carries a beeper at all times so that he can answer urgent calls from the members and must avoid the subway as his beeper does not work there. The requests for visits and beeper messages from members of LCS were stable from 1980 to 1989 - averaging 10 to 20 a month. In essence LCS is similar to social health maintenance orgnaizations that charge members a capitation fee. In 1991 the number of staff was increased greatly to 5 physicians, 6 nurses, and 5 office workers. LCS is expanding members' participation in the decision-making process, and public support for the program has been growing in the wake of the new system of payment by social health insurance for home nursing and terminal palliative care for cancer patients. At present LCS covers almost 900 members and has received a great deal of positive publicity on television and in the mass media for its unique and innovative system for supporting terminal patients in their own homes. Participants in LCS may spend their last weeks in their homes if they prefer to stay there. For example, from October 1980 through August 1987, 58% of cancer patients in the program died in their homes. Most, by the way, are told that they have a terminal condition, an unusual experience given the normal practice in Japan to avoid disclosure of this diagnosis.
Community Care for the Terminally Ill in Takasu, Hokkaido In urban areas team work by many professionals is enhancing the quality of life in the terminal period. System reforms based upon community needs for long term care and tearninal care are crucial issues in cities where plenty of social resources exist and compete with each other. In la~ral areas, however, community support is still rather limited. The community physician as a general practitioner is able to visit patients' homes and to consult with family members. Most of the people in rural communities know each other and are familiar with the background of each family. The tradition of care for the elderly and terminally ill is continuing in most farm households not only because of the shortage of hospital beds but also because the family structure allows them to help support the sick in their homes. Even with the reduction in agricultural manpower, older farmers and the self-employed want, so far as possible, to take care of dying relatives in their homes in accordance with the patients' wishes. These rural dwellers remember the deaths of their grandparents many years ago, and they are sensitive to the fact that most of the elderly and other patients have little taste for the great changes in daily life they would face in a hospital. In the small town of Takasu, a suburb of the northern city of Sapporo, a family practitioner named Dr. Asai, the town's only family doctor, is working in a private community clinic to fulfill the wishes of people to stay at home as long as possible. Historically in Takasu town, the town officers, public health nurses,
PROVISIONOF CARETO THE TERMINALILL IN THE HOME
443
and Dr. Asai had cooperated informally in providing care to frail elderly in their homes. In 1988 a research group including Dr. Asai, town officers, scholars, and a care manager organized a team to provide case management and to develop a more formal system of community care. Our research group, supported with funds from the Toyota Foundation, has been examining Dr. Asai's efforts to implement the case management approach in this community. Every two weeks the research group directs a case conference at which serious or complicated cases in need of care requiring team coordination are discussed. Five public health nurses and 4 home helpers are employed by the municipality. In addition Takasu town has one nursing home owned and managed by a non-profit private organization with funds from a national grant. The case management conferences are attended by people from the clinic, nursing home, and municipal government as well as by public health nurses, home helpers, social workers, and, of course, Dr. Asai. Given the limited resources in the town, close cooperation among the professions and the care providers is essential. Below we present three examples of individuals whose care was organized by the case management approach. The impact of the type of care they received on the costs of care is given particular attention. The cases were selected to illustrate lowest, average, and highest costs of care among the clients receiving case management. All of the clients had families and caregivers. Mrs. S.N.
Mrs. S.N. died of stomach cancer in her home. Her caregivers were very old and also very busy with the cultivation and management of their rice fields from early morning until late evening. Mrs S.N.'s family wanted to send her to a nursing home in the town, but unfortunately there was no vacancy. They hesitated to send her to a geriatric hospital in the city because of its reputation for keeping the patients in bed and providing a low level of care. Mrs. S.N. herself did not wish to move to the unfamiliar hospital. After several serious discussions with a town welfare worker and the family, Dr. Asai organized the team work necessary to support Mrs. S.N. in her home. A public health nurse, a home helper, a dietician, and a social worker from the town were mobilized to provide services to Mrs. S.N. and her family. The most pressing problems were how to prevent dehydration in the summer time and how to treat the small bedsores that were associated with her bedridden status. The care began in 1988 when the case management system was first being implemented in the town and continued until her death. Mrs. S.N.'s total medical costs borne by social health insurance and including copayments during her last 3 year was extremely low, only $340, mainly for house calls by the physician and some blood tests. The physician did not inform her of her cancer. The progression was slow and did not cause much pain.
444
NOBUO MAEDA AND SEIICHITAKAHASHI
Mrs. EK.
The illness and death of 92 year old Mrs. Y.K. also took an uncomplicated course even though she spent most of her time in bed due to rheumatoid arthritis. In the team conference about her case, team members spoke mostly about the desirability of home visits by a physician. The family members continued to provide skillful care for this strictly bedridden patient around the clock. The total medical costs paid by social health insurance for Mrs. Y.K.'s last 3 years was $5,300. She died quietly in her home in July 1992. Mrs. K.I.
One of our failures in case management occurred with 88 years old Mrs. K.I., who was suffering from irreversible dementia. In 1990 she entered a geriatric hospital because of a hip fracture. Before 1990 while she was regularly participating in a day care program operated in a community nursing home, the care team had worried about her falling or having some minor accident in her home. Once she was hospitalized in the city, she could no longer return home partially because of her illness but also because of the desires of the caregivers who could not support such a heavy burden in the home. The case management groups discussed her care and sought some alternative which would allow her to be discharged from the hospital; however, due to lack of communication, the hospital did not adopt any new approach. The total cost of Mrs. K.I.'s care during the two years since her 1990 admission to the geriatric hospital has amounted to $66,275, mainly in the form of payments to hospitals from social insurance. This sum does not include private payments of $100 monthly to the nursing aide employed by the family. MAIN ISSUES AND PROPOSALS FOR CARE OF THE TERMINALLY ILL By examining several cases of terminal illness in this rural town, we are able to evaluate the impact and importance of the case management approach to care. The credit for the success of this program goes to the chief of the welfare section, to Dr. Asai, and to a social worker at the community nursing home. Home helpers also attended case conferences on request to provide useful information on the situation of the family and the patient. In rural society most families hesitate to ask for formal support to alleviate their heavy burden. We should assist families providing care to patients in their homes by providing appropriate information, new equipment, emergency calls, transportation, and bathing services. In urban areas such as Tokyo the involvement of families with cancer patients is growing through such programs as the LCS. We have to make more effort to facilitate frank communication between the staff and the family regarding collaborative methods of community care that make use of all available resources, including neighbors and volunteers. Below we present several proposals for reform that we feel are essential for the prompt and efficient development of appropriate services for the terminally
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ill in Japan. (1) Primary care for the patient in the community must be strengthened. It is essential that the national health insurance program provide enough payment for physician visits and home health services. Since 1992 the Japanese government has enacted a new payment system for the visiting nursing center, and policymakers are making efforts to increase the payment for physician visits though it remains very low. The visiting nursing center is a special new agency for discharged hospital patients and employs visiting nurses who obtain payment through social health insurance. (2) The Japanese government should find ways to shorten the length of stay in hospitals; currently patient stays average around 40 days in general hospitals. Reducing the number of hospital patients will not only reduce costs but also free nurses and other staff to engage in community activities, such as visiting patients' homes and introducing day care programs for discharged patients. (3) New visiting nursing centers are aimed at developing community care for discharged patients, but at present, there is only one such center in the Sapporo area, theoretically serving a population of 1.7 million in 1993. Cooperation and referrals among hospitals are very limited in Japan, and the need to continue the ongoing reform of the medical system is urgent. (4) As a result of its evaluation of I 1 Pilot Projects of Home Nursing in Japan in 1988, the Japan Nursing Association made several proposals. The nurses recommended more home help services, day care, and respite care. They also believed more integration with community hospitals and health centers was needed to continue proper care for long term patients. Organizing more coordinated services and integrated activities is the responsibility of the municipality. (5) Specifically, at the community level, team work among the nurses, physicians, and home helpers is of the utmost importance for the terminally ill. Since 1989 the Japanese Ministry of Health and Welfare has allocated a budget for the special program coordinating case management for the elderly, but the policy and direction of this program are unclear and remain fragmented among government organizations. (6) In 1990 the Ministry of Health and Welfare set a new fixed payment of $5,770 a month for the terminally ill in hospices. This payment is for cancer inpatients only and includes palliative care. But few hospitals in Japan are actually receiving this payment; most are still very reluctant to participate in palliative care programs. Requesting informed consent of cancer patients is limited to special hospitals. CONCLUSION In conclusion we advocate innovative efforts in the community by the key decision-makers, the mayors and members of municipal assemblies, to develop team work among all of the professionals in the community. It is unnecessary to pay exorbitant costs for hospitalization, especially in the case of the terminally
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ill. Academics and research groups must document the cost-effectiveness and the satisfaction of patients and families who received care in the home. In most countries the age of the pre-eminence of treatment-centered hospitals is over. We need more comprehensive health and social services in an aged society to create supportive homes and families during the final years of life. It is very important to clarify the effectiveness of home care and of case management; however, the number of cases in our study is not sufficient to do this nor did we have a control group with which to compare the case management clients. Our original objective was to establish a case management system in Takasu. Our next objective will be to determine its effectiveness. ACKNOWLEDGEMENTS We thank Dr. Motosuke Asai, Mr. Mitsunobu Shimahata, Mr. Yosio Funahashi and Mr. Kazuaki Shibuya of Takasu-cho for their great assistance and help in collecting the data on terminal care in Takasu. This study was partially supported by a 1991 grant from the Toyota Foundation. REFERENCES Japan Aging Research Center 1991 Aging in Japan. Tokyo: Japan Aging Research Center. Maeda, N. 1989 Long-Term Care for the Elderly in Japan. In Caring for an Aging World, T. Schwab, ed. Pp. 246-264. New York: McGraw-Hill.
Nobuo Maeda Faculty of Medicine Sapporo Medical University S-l, W-1Z Chuo-ku, Sapporo, 060 Japan Seiichi Takahashi Faculty of Economics Sapporo University 3-7 Nishioka, Toyohira-ku, Sapporo 062 Japan
