LITERATURE REVIEW THE TERMINAL CARE OF ELDERLY PEOPLE IN EAST AND SOUTHEAST ASIA

quality of service has not been fully controlled yet. The availability of those facilities is also limited in the city area. In Japan, the number and the percentage of elderly people are increasing rapidly and the elderly people care facilities cannot accept all of them. The number of death cases is also increasing. It is necessary to prepare the system to accept elderly people at home or in the local community. It is also necessary to facilitate the education of care staffs. To prepare regulation of the terminal care, in Korea, Guideline of stopping the medical care for life extension had been prepared in 2010, but the guideline has no legal binding force. In Japan, the Ministry of Health, Labor and Welfare prepared the guideline for the terminal care in 2007. This guideline also has no legal binding force. In China, guideline has not been made. On the other hand, in Taiwan, Hospice Palliative Care Regulation had been legislated in 2000 and enforced in 2001. This law had been amended three times in 2002, 2011 and 2013. For preparing the system to accept decision of individual patients or family members at the end of life, Taiwan seems to be most advanced. B. Wish for the intensive care In East Asia, people tend to wish intensive care or tube feeding at the end of life. This tendency was stronger in China 48 for intensive care and 43 for tube feeding and Taiwan 47 and 38 for the family members. The trend to accept the intensive care was stronger for the family members but weaker for oneself. These tendencies may be related to the cultural background of East Asia. The decision of the family is important in China to select a plan of treatment. In contrast, the decision of each patient was most important, especially in Japan. In Korea and Taiwan, the decision of a medical doctor was also important. C. Attitude toward the death In China, Taiwan and Japan, the positive stance to the death correlated with the years of experiences of terminal care and death. In Japan, compared with nurses, care workers tend to avoid the death or do not wish to face the death. This difference may be related to the age difference between nurses’ group and care workers’ group, since the nurses’ group was older in Japan. Religious background was different between countries. The percentage of Christian was higher in Korea and the percentage of Taoism was higher in Taiwan. Although the percentage of Non religious people was not really high in Japan, Japanese people were not religious compared to other countries even if they said that they are Buddhist 62.7 were Buddhist , but for 81.1 of people, the religion was not important. Independent to these differences, in all countries, the view to the death correlated with the religious background. The view to the death correlated also with age. Surveyed the attitudes toward the terminal care and death in Korea, Taiwan, China and Japan showed people tend to accept intensive care or tube feeding at the end of life. This trend to accept the intensive care was stronger for the family members but weaker for oneself. These tendencies may be related to the cultural background of East Asia. Confucianism may be one of the common backgrounds. Confucianism originated as an ethical- sociopolitical teaching during the Spring and Autumn Period developed from the teachings of the Chinese philosopher Confucius Kǒng Fūzǐ, 551–479 BC, and later became the official state ideology of the Han Dynasty 206 BC – 220 AD. Since then, most Chinese emperors have used a mix of Legalism and Confucianism as their ruling doctrine. Although the disintegration of the Han in the second century opened the way for the doctrines of Buddhism and Taoism to dominate intellectual life, Confucianism remained in people’s mind. Historically, cultures of countries in East Asia, including mainland China, Taiwan, Korea, Japan and Vietnam were strongly influenced by Confucianism. In the 20th century, Confucianism’s influence has been greatly reduced. However, the ideology is still controlling the people’s behavior in these countries. One of the core rules of Confucianism is the respect to the higher order person of the family or the society. Based on this idea, respect to ones father andor mother is very important in East Asia. People may feel guilty if they could not do the best possible treatment to ones father or mother. They try to give the best treatment as possible to their parents, even if parents do not want to do so. In Taiwan, Hospice Palliative Care Regulation had been legislated in 2000 and enforced in 2001. This law had been amended three times in 2002, 2011 and 2013. In Korea and Japan, although both countries have guide lines for the regulation of the terminal care, the guidelines have no legal binding force. In China, guidelines has not been made. We need to learn from Taiwan the system to accept decision of individual patients or family members at the end of life while they were healthy or conscious. All of four countries are suffering a shortage of care staffs, especially in Korea and Japan. Taiwan is introducing care staffs from outside of Taiwan, mainly from Indonesia. Japan is also trying to introduce care staffs or nurses from outside of the country is accepting staffs only who had passed the national examination which was given in Japanese. Because of this strict rule, the number of foreign staffs is limited in Japan. On the other hand, Taiwan is accepting staffs who cannot speak Chinese. They are supporting the life of elderly people who need care in Taiwan. The condition of acceptance in Japan might be too strict. China is accepting staffs from a rural area in their own country, so that they do not have language problems. The role of religion was stronger in Taiwan and Korea. In Taiwan, each hospital was preparing special rooms for religious events and Buddhist monks were working as the official staffs of the hospital. Importance of religion was intermediate in China, and weaker in Japan. For the spiritual peace at the end of life, we may need to reconsider the role of religion. The positive stance to the death was correlated with the years of experience in our survey. Experience of terminal care and death must be important in the education of care staffs. The results must be useful to improve the education of care staffs. D. Palliative care Palliative care was defined by the World Health Organization in 2002 1, as : “... an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. ” Palliative care provides relief from pain and other distressing symptoms, affirms life and regards dying as a normal process, and intends neither to hasten nor to prolong death. Palliative care integrates the psychological and spiritual aspects of patient care, and offers a support system to help patients live as actively as possible until death. It also offers a support system to help the family cope during the patient’s illness and in their own bereavement. Using a team approach, palliative care addresses the needs of patients and their families, including bereavement counselling if necessary. It enhances quality of life, and may positively influence the course of the illness. It is applicable early in the course of the illness with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications 1,2. Palliative care should be offered as needs develop and before they become unmanageable. Palliative care must not be something that only specialized palliative care teams, palliative care services or hospices offer when other treatment has been withdrawn. It should be an integral part of care and take place in any setting. The needs of older people at the end of life. It is no surprise that most deaths in European and other developed countries occur in people aged over 65. None the less, comparatively little research has been carried out on their needs for palliative care. Older people very clearly have special needs, because their problems are different and often more complex than those of younger people : 1 Older people are more commonly affected by multiple medical problems of varying severity; 2 The cumulative effect of these may be much greater than any individual disease, and typically lead to greater impairment and needs for care; 3 Older people are at greater risk of adverse drug reactions and of iatrogenic illness; 4 Minor problems may have a greater cumulative psychological impact in older people; 5 Problems of acute illness may be superimposed on physical or mental impairment, economic hardship and social isolation. E. The Needs Of Caregivers Only relatively recently has the role of people caring for older seriously ill people been fully appreciated. There is relatively little formal knowledge about their needs, although their role varies considerably. It may include carrying out intimate tasks such as washing, helping people to dress and go to the toilet, or heavy tasks such as lifting. This kind of caring is usually performed by people with close kinship ties, often living in the same house and motivated by love and a desire to keep an older person out of an institution. However, the burden of care may lead in time to conflicting emotions, dealing with changes in personality and behaviour, restrictions on the carer’s own life, and the drain on financial resources. Long-term care for seriously ill relatives is unpaid and unsupported work that may damage the health, wellbeing and financial security of caregivers themselves 11. As ageing populations develop new needs, health care systems need to be equally flexible in their response and perceptions about palliative care need to change. Traditionally, palliative care has been offered most often to people suffering from cancer, partly because the course of this illness is more predictable and it is thus easier to recognize and plan for the needs of patients and their families. One consequence of this has been the perception that palliative care is relevant only to the last few weeks of life and can be delivered only by specialized services

CHAPTER III RESEARCH METHODOLOGY

A. Research Design

Mixed method with explanatory design will conducted in this research. The surveys and qualitative study were performed in Indonesia and Japan. Scheme 1. mixed method with explanatory design : Follow-up Explanations Model Creswell Clark, 2011 The explanatory design is a two-phase mixed methods design. The overall purpose of this design is that qualitative data helps explain or build upon initial quantitative results. The design starts with the collection and analysis of quantitative data about characteristics, role and attitude of care staffs during the period near the end of life. The first phase is followed by the subsequent collection and analysis of qualitative data. The second, qualitative phase of the study is designed so that it follows from the results of the first quantitative phase.

B. Population and Sample

Population for quantitative approach are 419 staffs 319 in Japan and 100 in Indonesia who are working at elderly care facilities hospital, nursing home, primary health center participated in our survey. The details of participants in each country for the type of job and numbers are nurses, medical doctor, and social worker. The percentage of medical doctors was low in Japan and Indonesia because only a few medical doctors were participating as staffs in the elderly care facilities. Technical sampling use purposive sampling. Population for qualitative are nurses, medical doctor, social worker, policy maker and institution of nursing education. Teknik sampling yang akan digunakan adalah Quantitative data collection Quantitative data analysis Quantitative results Identify results for follow-up Qualitative data collection Qualitative data analysis Qualitative results Interpretation Quan  Qual sampling jenuh dimana apabila data yang didapatkan telah jenuh maka sampel diperkirakan sudah mewakili.

C. Research Location

This research will be conducted in two countries, 1 countries in southeast Asia Indonesia and 1 country in east Asia Japan. The location are hospitals, nursing homes public and private and palliative care unit. In Indonesia, there are 5 health institution that conducted with this research, they are PKU hospital 1, PKU hospital 2, Two public nursing homes : Abiyoso nursing homes and Budi Luhur nursing homes, and one private nursing homes : Hana nursing homes.

D. Research Analysis

Quantitative analysis will be done by compare each country and than compare country in southeast Asia and east Asia. Quantitative analysis will used t-test and Anova. Qualitative analysis will used content analysis.

E. Ethical Consideration

Informed consent will given to all participants, include quantitative study and qualitative study. Ethical clearance will be process at Ethic Committee of Faculty of Medicine and Health Sciences Universitas Muhammadiyah Yogyakarta.