Promotion of End-of-Life Care at Home for the Elderly in a Community Setting in Japan: Results of Qualitative Research
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Session presented on Saturday, July 26, 2014: Purpose: Background In Japan, according to the national statistics, only 33.1% of the elderly people died at home, even though 89.1% of them wish to die at home. This discrepancy indicates obstacles existing in many areas in this society. One major reason is that advance directive is not legislated, and only a few people write their end-of-life wishes as a legal document in Japan. Without legal protection, healthcare professionals want to escape from legal trouble even if the elderly show their wishes at the end stage. In order to protect the elderly wishes of dying without any life-prolong medical actions in this country, it is necessary to educate the elderly to write a advance directive documentation and make it legally active. On the other hand, environment should be prepared to make the documentation active. First, we need to educate the elderly how they spend their end stage, and to support them to make their decisions. Secondly, we need to enhance discussion with the elderly and the families regarding the end-of-life wishes and advance directives. Thirdly, we need to support medical professionals to accept and follow the document that the elderly make. To achieve our goal, we conducted the action research. Moreover, during taking this action research, we found that healthcare professionals working in community including medical doctors and professional caretakers were insecure and less confidence in providing end-of-life care which allows the elderly dying at home. In this presentation, therefore, we will report the qualitative research results of obstacles recognized by medical professionals in community settings regarding actualizing the elderly dying at home. Action research goal The final goal of this action research is to actualize the elderly people's wishes. Action research procedure to actualize the goal 1st step: Developed a committee to achieve this goal. Recruited committee members from the community and from medical facilities and healthcare agencies of the town. 2nd step: Conducted an attitude survey to the elderly living in the town regarding end-of-life wishes and the obstacles achieving them. 3rd step: Provided educational lectures by lawyers to the elderly how to spend their end-of-life stage and to make decisions and advance directives. 4th step: Conducted a qualitative research study to healthcare and caretaker agencies about their recognition and attitude to end-of-life care and advance directives. 5th step: Developed the system actualizing the elderly dying at home. Conducted meetings and conferences to promote the action with personnel of the clinics, home-visiting nursing agencies, care manager offices, and home help agencies regularly. All of them support the elderly's daily life. Purpose of this study: The purpose of this study was to extract the obstacles from the healthcare staff and caretakers in terms of actualizing and supporting the elderly's wishes regarding end-of-life stage. This is a report of 4th step result. Methods: Participants of the 4th step research study Participants were personnel from clinics, home-visiting nursing agencies, care management offices, and home help agencies in K town in Hiroshima City, Japan. Primary physicians, nurses, care managers, home helpers and home-visiting nurses were participated. K Town is a highly aged community. Method of this research: The semi-structured questionnaire was administered to the participants. The participants were asked to write and describe obstacles to actualize the elderly's wishes dying at home. The data were analyzed qualitatively and categorized. To assure the validity of the analysis, categorized data were returned to the participants and checked by them (member's checking). The ethical consideration was taken. Results: Five categories were extracted from the qualitative analysis. Those are shown in below. 1. Difficulty in cooperating multidisciplinary between agencies (home-visiting nursing agencies, care management offices, and home help agencies) and clinics (physicians). 2. Lack of knowledge and skills about the end-of-life home medical care due to the little experience of the home medical care at the end stage. 3. An underdeveloped system of care at the end stage such as shortage of manpower or difficulty of treatment in emergencies 4. Preoccupied recognition by medical professionals, health caretaker, the elderly and their family that it is natural to die at a hospital, and they believe it is impossible to die at home without enough social background (family living with them, enough budget to ask enough social resources). 5. Patients' and families' lack of knowledge on the end-of-life care. Discussion: These findings show that there is a shortage of health care workers in a community, and collaboration system between multidisciplinary is underdeveloped in practice of the home medical care at the end period. While the promotion of the home medical care needs to be is hurried because of the rapid aging progress and increase in hospital death in Japan, community supporters feel that it is difficult to care at home at the end stage. It is necessary to take it from feasible measures. Furthermore, it is supposed that a cultural background is related about the problems. Japanese sometimes entrust decision to their families even if it is personal decision and they leave medical care to an expert. However, we can help to make it possible to support a patient at the end period if we make their hope clear. Actually, supporters feel that it is difficult to care at-home without declaration of their hope. It is required education and support that Japanese people are enabled to make an advance directive. Conclusion: Discussion Recognized obstacles by healthcare professionals occur in two areas; One is healthcare professionals' factor and the other is elderly's factor. In the healthcare professionals area, communication gaps existed between medical professionals and caretakers, care managers, who mostly do not have medical knowledge. This lack of medical knowledge makes caretakers and care managers withdraw taking necessary communication with medical professionals. Most of caretakers often feel fear of communicating with physicians, which, as a result, make a multidisciplinary team discussion regarding end-of-life care difficult. The fact that most of the elderly dying in hospitals make healthcare professionals and caretakers lack of experience in taking care of the elderly dying at home. Therefore, they are insecure and anxiety taking care of the elderly. So when elderly's conditions get worsen, healthcare workers and caretakers feels anxiety and send them to hospitals. Lack of manpower of home-health professionals is crucial. Taking care of end stage takes a lot of time from the professionals. This situation makes the professionals reluctant to take care of the elderly dying at home. Therefore, Japanese government seriously need to take an action to increase healthcare professional in community settings. Without manpower, it is impossible to actualize at-home-death. Patients and families also need to be educated more about end-of-life care and decision-making. It is obvious that they are not provided understandable information about healthcare resources which actualize dying at home. The most important thing is that we need to accumulate successful cases one by one. When we have a case who want to die at home, it is important to have a case conference with a patient, the family, medical professionals, a care manager, and caretakers together, which will actualize at-home-death. To resolve these obstacles, we will continue this action research project. Summary: This study showed that health care workers who provide end-of-life care at home feel difficulty in various dimensions. It seems to be related to the underdeveloped system of the end-of-life care and lack of community education. In order to promote at-home death, we need to accumulate successful cases one by one with multidisciplinary discussion.