Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Chief Executive Director, Tokyo Progressive Muscular Dystrophy Association, JAPAN
PMD is one of the hereditary diseases that still has no cure. The discovery of an innovative remedy for PMD is what the patients and their families long for most. But besides waiting 'passively' for a new remedy to appear, my son and I actively sought to appreciate the meaning and value of human existence through our daily experiences. This earnest pursuit of a fruitful life with no regrets made us decide to keep him living in the community under home care, even though the bias against those with hereditary diseases is deeply rooted in Japanese society.
Having decided to take care of my son at home, I was faced with two tasks these were, 1) to find a new perspective enabling the patients and their families to live in the community and to clarify the conditions for such community life, 2) to find suitable forms of medical, health care and social welfare services to fulfil such conditions. Thus my patient-group activity began to take a new direction. It is prerequisite for developing any patient-group that it has actual members. So my group started a 'travelling-clinic program' free of charge for those with PMD and advertised it through the mass media (newspapers, TV and radio). This program aimed at referring to the proper medical organisations those latent patients who were undertreated and left with little information on the disease, but leading lives of anxiety and inconvenience.
Through this program, I learned that just referring a patient to the proper medical organisation was quite insufficient and meaningless. What then needed was to promote the continuity of the medical care. For this purpose, my group then started the 'group-hospital-visit program'. From this we were led to confront a big enterprise. This was the appeal movement for the construction of a special hospital for patients with intractable neuromuscular diseases.
Thirty years ago, when I started the patient-group activity, there was only one hospital in Tokyo staffed with specialists in neurology. This being the situation, it was quite impossible that every patient in Tokyo with intractable neuromuscular diseases be treated by such specialists. And those who visited the hospital being forced to commute long distances tended to drop out because of this burden, and so were left untreated.
The appeal for a new special hospital, started in 1971, and resulted in the construction of Tokyo Metropolitan Hospital of Neurology in 1980. Since then this hospital has been playing a tremendous role in the community care of patients with intractable neuromuscular diseases. Though its true significance was not fully appreciated at first, now that the hospital has been operating for 10-years we can identify its merits as follows:
1) The hospital is endowed with the most up-to-date medical equipment and functions as a research hospital as well as an educational one, working together with the research institute built together nearby. The institute, the Tokyo Metropolitan Institute for Neurosciences, includes many fields of study ranging from basic medical sciences to medical sociology and nursing. The hospital attracts many excellent clinicians and researchers from all over Tokyo and Japan, trains them and sends them back to their homes to play an active part there.
2) As a result, specialists of neurology are now available in many districts in Tokyo. Patients only need to travel short distances to see a doctor and are provided with a wide choice of specialists they can see.
3) Through this, the barrier between big medical organisations and small ones such as family practitioners' has been removed and so-called collaboration between the central hospitals and the community clinics has been made easier. This has made possible an improvement of quality in home care.
The collaboration between big medical organisations and small ones, however, is not necessarily soon achieved just by the construction of new hospitals. In the case of Tokyo, two more steps are required; these are, 1) the big hospitals need to change their attitudes towards community health care, 2) systems for community health care need to be prepared that complement and support hospital care. For my group, this meant creation of a home visit medical service by the hospital staff to take care of discharged patients and the creation of community care systems so that the community is prepared to receive and take care of the patients.
After the 'group-hospital-visit program' , my group started up a 'home visit medical service' taking by car neurological specialists and other medical personnel to visit the patients who, because their diseases were far progressed, could not endure a long time travelling to or waiting at the hospitals. As there were many patients who passed away while they were enroled on admission lists but could not be readmitted because there were no vacant hospital beds, one of the hospital staff in the 'home visit medical service' suggested that a hospital-based home visit service should be provided to all the discharged patients who needed it and that such a program should be officially institutionalised. Supporting this idea, my patient-group appealed to the Tokyo Metropolitan Assembly, and the 'home visit medical service system' was started at the Tokyo Metropolitan Hospital of Neurology. A special section was newly organised for this service and has been active ever since. This was in the autumn of 1974.
While a hospital-based home care system was thus being advanced through home visiting, the development of a community-based home care system began in the autumn of 1975, when the local branches of the Japan Medical Association, patient groups, public health centers and concerned administrative bodies provided in cooperation group medical consultations for patients with intractable (mainly neuromuscular) diseases. This program had its roots in my patient-group's 'travelling-clinic program' mentioned in the first part of this paper. As the program did not exclude patients other than those with PMD, patients with all kinds of neuromuscular symptoms and troubles gathered and the travelling clinic gained experience with almost all kinds of intractable neuromuscular diseases. The 'Tokyo governmental research group on home care for patients with intractable neuromuscular diseases' took notice of this program and weaned it as a link into the groups research activities.
Community care programs for patients with intractable diseases must be built on an accurate picture of the number of the patients in the area being covered and how they manage their lives. To do this, the research group designated a certain community as a field study, and my patient-group invested the funds and know-how of our 'traveling-clinic program' into this new area. The experimental program was carried out there through the collaboration of the medical, health care and social welfare organisations in the community. This experience of collaboration was the starting point for the later growth of coordination among organisations and facilities, which enabled the establishment of a community care system for discharged patients. Since then, the 'travelling clinic program' provided by my patient-group has been renamed 'medical consultations for the intractable diseases', and now is run by several district governments supported by the related organisations in the districts.
This medical consultation service, which was started at first as a rather private program for a limited number of patients with limited kinds of diseases, has been opened up to the community and patients with many other kinds of diseases. It has grown into a program provided by branches of the Japan Medical Association or supported by municipal governments.
Furthermore, a community-based case consultation service and home visit medical service are now available and so local leadership has come to be encouraged. A 'case consultation service' is provided at a governmental office one to three months, which aims at following up patients discovered by the 'medical consultations for intractable diseases' service. Patients may experience many troubles and problems due to the disease process, and this 'case consultation service' is to deal with them. The community-based home visit medical service is, unlike the hospital-based one, provided by a community team made up of local medical, health care and social welfare personnel from the community where the patients live. Specialists from outside are being invited to participate.
From the patients' standpoint, 'medical consultation', 'case consultation' , and 'home visit' mean respectively early diagnosis, early patient education, and support for home care. They form a linked series of systems for supporting home care. They are the basic conditions for successful home care of patients with intractable diseases, securing them opportunities to see medical specialists and enabling them to maintain an appropriate lifestyle.
These programs, however, are providers-oriented in the sense that they are scheduled by the providers (medical, health care and social welfare organisations). Medical consultation provided once a year, case consultations several times a year and home visits once a month may be quite insufficient for those patients who have severe problems in the home care setting. Especially for those patients who are severely ill or in the terminal stages and need 24-hour a day observation and care, patient-oriented, not provider-oriented, scheduling is absolutely essential to deal flexibly with their conditions.
Today's aging society and the advances of medical sciences and technology have led to an increase in life expectancy and hence have produced a great number of people in chronically ill states that need long term or life-long treatment. As a result, demand for medical intervention has grown explosively. Because medical resources, on the other hand, have their own limitations, the national government has set a strict containment policy for the construction of new hospitals and increases in hospital beds. Now, according to these national regulation, even patients with an intractable diseases who need much care cannot stay in hospital longer than 3 months. After that period patients are asked (or actually 'told' ) to go home.
Thus patients are obliged to manage their lives in the community. Because of this, there is an urgent requirement for community care providers to offer systems to take care of the seriously ill in their home 24 hours a day and 365 days a year. I have a clear vision of what such systems should be like through my experience with my son, who was taken care of at home during the terminal stages of his disease.
He had a strong desire to live as an active member of the family even in the last stage of his life. Even after he fell into a state of chronic respiratory failure, he stayed home for a year until his death after having a tracheostomy to secure his air passage and having his sputa removed by the mechanical suction method. During this period, his need to change body position and have sputa removed arose as frequently as every few minutes, and in taking care of him my family soon become sleep-deprived and extremely exhausted. The whole family was on the point of collapse, what saved us and helped us through the crisis was the help given by a community-based home care team organised for us, which surrounded and supported us.
The home care team was made up of the patient's physician (a general practitioner), nurses and public health nurses, a social worker and volunteers in the community. What enabled the creation of such a multidisciplinary team was basic coordination and cooperation among the related organisations in the community. This basic coordination and cooperation had been established, as mentioned before, through the 'medical consultations for intractable diseases' program. There had been cases other than mine that were helped by home care teams, most of which were organised and managed rather individually by certain enthusiastic and devoted individuals. That form of care team would be liable to fail should those devoted individuals have to leave the team for some circumstances. In addition, this form of care team depending on particular individuals might be rather private and lacking in generality, and be unable to meet all similar needs as they are.
The maintenance of a team is essential; should some of its members leave, their position must be filled, for which the organisations they belong to should take the responsibility. For this reason, too, coordination and cooperation among the related organisations are indispensable. Community health care systems to receive discharged patients, creation of home care teams, assurance of continuity and stability in home care team activity and coordination and cooperation among related organisations are all essential to the development of community care.
Those conditions listed above are necessary ones for sound community health care, but not sufficient ones. As existing social resources do not meed all the needs in home care settings, new ones should be developed further. New social resources strongly required at present are; 1) intermediate care facilities to support home care (respite care facilities), 2) intermediate care facilities to support long-term in-patient care (long-term care facilities), and 3) network centers for the related organisations and facilities.
Though both 1 and 2 above include the term 'intermediate' meaning 'in-between hospitals and home' , they are quite different in their functions. Type 1 facilities are to provide institutionalized care to the patients for a short period of time in order to relieve their caregivers(members of their families) of strain, while type 2 provide services for those patients who are out of the acute phases of their illness and need no more hospital care, but who still need highly advanced nursing care that cannot be managed at home. Both unique types of facilities have long been required by patients with intractable diseases and their families, but they have not been built yet. Their development is an urgent concern for the patients and families, who are threatened by the limitation in length of hospital stay and hospitals' request for discharge.
As a model project for type 1 facility, I in fact converted my own house in 1985, and I have been testing its effectiveness since. The idea of such facility came to my mind at the home care team conference for my son. The team members and I had a discussion on what we would have done if the members of the family had got ill and could not have taken care of the patient any more. Though my facility is still in its experimental stage, these findings have been obtained so far: this type of facility aims at supporting family caregivers, so its staff should consist of lay volunteers from the community, rather than health care professionals; hence the facility should not be larger than an ordinary home and the staff taking care of the patient and his/her family should be small enough to keep close personal ties with one another; as such facility is not medically prepared, backup by medical organisations is essential; because one facility is small-scaled as mentioned above, several of them should be scattered throughout the community to meet its needs.
On the other hand, type 2 'intermediate care facilities to support long-term in-patient care' aims at taking care of medically-dependent patients who need highly advanced nursing care that cannot be managed by their families, rather than support of the care givers. Patients with tracheostomy and under mechanical ventilation used to stay in the hospital their whole life long. But today in the same way as other patients they are required to leave the hospital once their physical condition has stabilised. As long as their physical condition is stable, they need not be under such strict medical supervision as provided in the hospitals. What they need most at this stage is nursing care, which might not be well managed at home. Type 2 facility takes care of such patients. This facility would provide mainly nursing care, and should be placed next to a hospital so that emergency situations can be handled promptly.
The third type facility, network centers for the related organisations and facilities, came up through my experimental activity on an intermediate care facility to support home care. As soon as I started my experimental facility, a strong need appeared for a service to receive and answer the patients' and their families's cries for help. There was no central body playing a coordinating role in enroling medical, health care and social welfare personnel to organise a home care team. Patients and their families can feel alienated from the existing services, private or public, as there are no facilities that help them gain easy access to those services when they are at loss.
My experimental care facility has naturally taken on the role of a such network center through its activities. What should be discussed next is whether such a network center be attached to an existing organisation or be set up independently. Anyway such network centers should be, as I have learnt, not only the center of the organisational network but also the center of the human network.