Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Professor, Shiraume Gakuen College, Tokyo, JAPAN
I would like to introduce two poems by patients with incurable (intractable) diseases to convey their emotions and thoughts.
Case 1: "Laughter I hear from the kitchen, tastes good, voices are sweet and cheerful."
This poem was written by a 62-year old female patient with amyotrophic lateral sclerosis (ALS) while she was staying at a "short stay" facility and being helped by volunteers. Her joy is well expressed in its rhythmic notes.
ALS is one of "the intractable diseases" designated by the Japanese Government for which publicly funded assistance with medical expenses and associated costs is given. As the disease progresses, patients develop complete paralysis of all the limbs, dyspnea and dysphagia, and hospitalization is generally indicated. However, this patient, Mrs. K., lives at home with her husband who is older and receives care and support from various sources; her primary care physician visits her once a week, the specialist from a hospital visits her once a month, public health nurses from the health center and volunteers visit her regularly, and she occasionally goes to stay at "the short stay center" to relieve her husband from nursing.
Case 2: The Morning After Returning from Hospital - Makiko KURIHARA
Parakeet sings vigorously
Washing machine spins noisily
Cups clatter in the sink
My little sister's hymn singing moves me
Home, sweet home
No more blood sampling nor drip infusion
No more holding the button for calling nurses
Dad and Mom where I always can see them
Sister is here when I call her
Home, sweet home
I thank the Lord for letting me come home (one more time)
Home, sweet home
This 38-year old patient with progressive muscular dystrophy, PMD, returned home wearing a respirator. Her poem is full of the joy of living and thanks to God for letting her return home from the hospital. Her disease has progressed gradually over a period of more than 30 years and now her systemic muscles are weakened and she has increasing difficulties in moving her limbs, and often has respiratory insufficiency. After manual assisted respiration, she is now dependent on the respirator. Her 35-year old sister is also suffering from PMD, and her 65-year old father and 59-year old mother are looking after them. A team consisting of a public health nurse from the health centre, the primary care physician of the community, a neurologist from a university hospital, a home helper and a volunteer nurse is assisting them.
2. The Life and Care of Patients with Incurable Diseases
Patients with incurable (intractable) diseases can live at home with their family the same as anybody else provided there is an adequate system of support. A patient, who is usually thought of as "passing away gloomy days", may actually be living vigorously, magnificently and cheerfully as these poems show and is often a "master of living life".
In the Japan of old, it was natural for any old or handicapped persons to pass away all their life with their family. But with the advent of easy access to and availability of medical care and the increase in nuclear families and working women in recent years, a larger number of patients are now placed in hospitals or old people's homes for care. And yet it is possible for a diseased or handicapped elderly person who so desires to receive nursing care while he/she continues to live in his/her own home. Although Japan's medical care system has been known for its relatively high dependence on hospital care compared to other industrial nations of the world, with the arrival of the aging society this is now changing and increasing emphasis is being attached to home nursing care. Adequate policies and support system are required for improving the home nursing care for patients who wish to remain home and for their families.
I wish to discuss the requirements for such a system with a particular emphasis on home nursing care services.
3. Basic requirements for home care for patients with intractable diseases
What kind of system is required for home nursing care? How should the system be started? I would like to discuss concretely the following two points that require particular attention. One is related to establishing the functions for nursing and the other involves the community care system.
a) Establishing nursing functions for patients staying at home
Families caring for patients with incurable (intractable) diseases or bed-ridden elderly suffer immeasurable emotional hardship. The conventional idea in Japan has been that they alone should bear this burden and do their best to care for their sick and elderly. To see the present conditions of such families, and how they go about nursing, three cases of home care for patients who require extensive assistance in daily life are discussed based on the result of a time study conducted on a typical day of such cases.
Case 3: The patient is a 65-year old male with hemiplegia on the right side and dysbasia as the sequela of subarachnoid haemorrhage, who takes meals by sitting in a wheel chair but spends the rest of the day in bed watching television or listening to radio. He requires assistance in all aspects of his daily life. He is considered a typical example of the many "bed-ridden elderly" with sequela of strokes who are living at home.
A total of 7 hours and 33 minutes is spent in caring for him, mainly by his wife, helped by their eldest daughter. The wife spends 5 hours and 28 minutes or more than 1/3 of her waking hours in caring for him. If the time spent for changing diapers at night is counted, her sleep is also disturbed. On the day of the survey, the daughter spent 2 hours and 5 minutes caring for her father, giving her mother some respite, and time for her own interests.
Case 4: The subject is a 40-year-old male with progressive muscular atrophy of the limbs who is able to move about in a room if supported from the back. He spends the day sitting in a chair, but requires assistance in everything and his speech is inarticulate. He has a small child and is cared for by his wife who spends 7 hours and 40 minutes on caring for him, substantially similar to the hours spent by the wife in Case 3. She has no time for leisure or cultural activities and only 8 hours and 49 minutes for attending to her daily essential chores, which is shorter by 1 hour and 30 minutes than housewifes in general. His home care is made possible solely based on her sacrifice, especially since she has no one to help her. Unless she gets help in nursing care and housework, her health will be damaged and she will become unable to cope mentally.
Case 5: The subject is a 39-year old male with amyotrophic lateral sclerosis, ALS. He requires a respirator and extensive care in all phases of his life including the respirator control. The total time spent by his wife in caring him is 7 hours and 59 minutes, longer than in the other two cases. Her time for essentials of life is short and she has reduced the time spent on housework. The frequency of direct care is extremely high and is distributed over all the time zones. The wife hardly has the time to breath (Figure 1). He is visited three times a week by two nurses for a total of 7 hours and 48 minutes for a dry bath, shampooing, and changing his bed linen, which cannot otherwise be done, and to prepare medical equipment and materials. However, the wife is not able to take a rest even those days as she works with the nurses and spends 9 hours and 59 minutes, longer than the hours she spends on other days. Thus, the assistance being offered currently does not help the wife, indicating that further extensive assistance and support in nursing care and house work should be given.
The results of this time study reveal that nursing care in all three cases imposes a heavy burden and hardship on the family members, who are forced into a demanding lifestyle. Especially shorter hours for careers in attending to daily essentials means that the time for maintaining their own life, such as for meals and sleep, is curtailed. Short hours for housework mean that the time for maintaining the health of family members and raising children is being curtailed. This may endanger the entire family's health. Nursing care services must be offered by society in order to decrease the burden of families.
In addition to assistance with housekeeping, care services by professional nurses are important for the patient's families. In particular, participation by nurses in the home care enables observation of the individual patient, and the problems in assistance and of the family members to be ascertained. Based on this concrete measures to resolve these problems could be proposed and implemented, and professional comprehensive nursing services offered.
Patients staying at home often require professional nursing skills that are not available from home helpers or volunteers. Of course, without nurses, home nursing care is impossible. As indicated by Case C, nursing care should be offered frequently and the length of such care should be extended, according to the state of the patient. Guidance and training of family members alone are not enough.
Securing nurses in the community is crucial for offering sufficient nursing care services to such patients staying at home. For such work, there are not enough public health nurses, clinical nurses or visiting nurses, making it difficult to establish a system of home nursing services. Respecting life and working to make it more affluent are the fundamentals of protecting basic human rights. Securing enough nurses is a crucial challenge to be met in developing the community care system and is an ethical issue that needs to be addressed.
The subject of Case 1 who I discussed at the beginning of this paper lives in Hino City in the suburbs of Tokyo and is being helped by the support system which has developed over the more than 10 years of her life spent fighting the disease. She is secure under this system. Hino City commenced screening for incurable (intractable) diseases in 1970 supported by the "Association for Advancing Medical Care and Welfare" and the regional medical association with help from health centres and the municipal government. Fuchu Hospital (currently Neurological Hospital) offered secondary medical care. This led to the offering comprehensive care by a team of health, medicine and welfare personnel to patients living in the community. In 1982, Hino City Research Institute of Community Care was opened and its affiliated organ, Airinsha, began activities. Volunteers who are usually neighbours and friends of the patients staying at home offer assistance for home visits, short stays and day care under the guidance and assistance of professional staff. Both the service providers and receivers are members of the Association and all endeavour to build a community where residents may live happily. The results are being studied objectively and used in offering services which are more accessible to all. Mrs. K agrees with this principle and offers her full cooperation. She is both the recipient of services and a supporter of the work.
The important thing is that the sectors of health, medicine and welfare cooperate with each other and make up an organic network. Functioning as a system has a great and indispensable significance for development of care. In the example of Hino City, professional nurses are very active and form a core for organising the community care service. The development of organised services is remarkable in regions where there are vigorous nursing activities. The nursing activities influence the interacting areas of health, medicine and welfare and contribute to the development of the system.
4. Conclusion: Bioethics and the significance of home care
Home nursing care for patients with incurable(intractable) diseases has been discussed. Local residents and the patients themselves are part of this, and professionals make up the core. In particular, when nurses make up a system for home visiting care, and undertake the nursing work, then and only then the patient's life and living are adequately protected, and an ethical society is materialised.
I would like to consider the significance of the home nursing care from this standpoint. Home nursing care service for patients with incurable(intractable) disease means organised activities for offering assistance to patients who require social support. Services provided by nurses play an important role.
When acting alone, individuals or organisations related to medicine, public health and welfare, often find it difficult to solve the physiological, psychological and social problems faced by patients with incurable(intractable) diseases who are constantly threatened with possible death. It is important that nursing staff should cooperate with those in charge and offer assistance. A service should be offered to make systems for the purpose of concrete problem-solving.
a) Establishment of a system for home nursing care
Nursing staff such as public health nurses of the health centres, the municipal governments and the hospitals, clinical nurses, etc. should cooperate and make up a system in which a plurality of people participate to address the difficulties faced by patients with incurable(intractable) diseases staying at home.
b) Care by home nursing system
The multifaceted problems faced by such patients require nursing care based on assessment of their physical conditions, social and environmental conditions. Guidance regarding their daily life, the services of attending physicians, arranging conditions to allow continued medical care, and supporting of their families are necessary to solve the problems. These care services are offered through the cooperation of professional nursing staff. Health care nurses play the central role in solving problems regarding the support of their livelihood in the community, and nurses the central role in health care, with housekeepers, etc., also participating.
The following is the process that unfolds: 1. Clarify the problems of patients and families; 2. maintain good relations and sympathy with patients and their families; 3. work concretely to solve problems; and 4. promote coordination among those concerned. By solving these problems of patients and their families, a relation of mutual understanding and respect is born among health workers. In addressing patients and within the groups of professionals, cooperation and good ethical standards are established as people respect each other as equal persons. Bioethics in the community is thus promoted.
1. Kinoshita, Y., Home care for patients with incurable diseases (Igaku Shoin, 1978). (In Japanese)
2. Kinoshita, Y., Start for home nursing care (Keiso Shobo, 1978). (In Japanese)
3. Kinoshita, Y., Rehabilitation in community and homes (Shuppan Kagaku Kenkyusyo, 1988). (In Japanese)
4. Kinoshita, Y. et al., Aging society and welfare of care (Minerva Shobo, 1986). (In Japanese)
5. Ishikawa, S., Mutually supporting life and building community (Hobunsya, 1990). (In Japanese)