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A Study on the Institutional System for Improvement in Dying Journey and Dying Experiences of the Patients and Their Family
Attach Author Seo Jaehee Date 2019/11/19

The death is the experience and event which anybody should suffer at end of his/her life. Death may be considered to be one of the portals which everybody should go through at the end of his/her life. But, the processes, or the journey to the moment of death and the experience during the journey vary for everyone. Therefore, the good death cannot be accomplished only with the good experience at the time of death but shall include all experiences obtained during the journey to the moment of death. A lot of researches made on what is good death show that the good death is essentially the “humane” death. It is consistent with the patient’s hope of living up to the moment of death at his/her own will. It means that the good death can be made only when the human rights and self decision-making right are respected so that a patient can be treated humanely as a human until the last moment. The policies related to the good death in Korea include the systems related to the ‘hospice-palliative care’ and ‘decision on life-sustaining treatment’. These two policies get more prevalent after Act on Decisions on Life-sustaining Treatment for Patients in Hospice and Palliative care of at the End of Life was recently enacted and implemented. Although this Act has the meaning in that it keeps the quality of life maintained to the maximum until the end of the human life and that it ensures the patient’s self decision on the life-sustaining treatment, it needs some improvements. Currently, the hospice-palliative care is mainly implemented at the medical institutions and focus on a few weeks or months at the end of one’s life. If the policy goal is to help the patient or his/her guardian experience the patient’s good death, the policy shall not be limited just to a few weeks or months up to the moment of death. More advanced approach is required. Earlier interference shall be made to improve the quality of the life for the patient’s remaining life so that the action can be consistent with the original concept of palliative care. In addition, the hospice care which has focused on the medical institutions up to now shall be expanded to include not only the home-based hospice care but also the care at long-term facilities. The laws which were enacted to ensure the patient’s self decision-making right up to the last moment were found to have problems when they took effective. They include the complicity of the procedure, lack of professionalism in the related medical institutions, lack of understanding by service provider and users and others. The most skeptical one is whether these laws can ensure the patient’s self decision-making rights. To ensure the patient to get his/her own decision-making right over medical treatment up to the last moment of life, the right shall be guaranteed not only to the care performed at the end of life but also to the general scope of treatments. As shown in the cases of US, Australia and Taiwan, which had enacted the related laws prior to Korea, they all started with “natural death act” but became to expand the scope to include “Patient decision act”. Accordingly, when the revision of the law is discussed, the revision shall be made not just for several provisions but include the revision of the expanded laws. If the improvement of the medical system is made in this direction, it can be expected that the experience of patient and guardian are improved and at the same time, the national medical expenses related to the death are reduced 


Abstract ················································································································1


I. Introduction ···························································································9

  1. Research Background and Purpose ·················································································11

  2. Research Scope and Methods ···················································································18


II. Review of Previous Studies and Major Terms ···············································21

  1. The Definition of Death ····························································································23

  2. Attitudes and Thoughts about Death ·········································································25

  3. Phases in End-of-Life Journey and Terms in End-of-Life Services ·················································38

  4. Chapter Conclusion ·······································································································47


III. End-of-Life Service Users and Providers' Experiences of and Thoughts about End-of-Life Journey ··············49

  1. Service Users' Experiences of and Thoughts about End-of-Life Journey ··········································51

  2. Service Providers' Experiences of and Thoughts about End-of-Life Journey ··········································61

  3. Chapter Conclusion ·······································································································66


IV. Institutional Approch to Making a Decision about Death ···················································69

  1. Institutions in Korea Regarding Palliative Care ·························································71

  2. Institutions Abroad Regarding Palliative Care ·························································80

  3. Chapter Conclusion ····································································································109


V. Institutional Approach to End-of-Life Care ··········································113

  1. Hospice?Palliative Care Policies in Korea ·······················································115

  2. Palliative Care Policies Abroad ·······················································142

  3. Chapter Conclusion ·····································································································209


VI. Conclusion ······················································································213

  1. Institutional Limitations, Direction of Improvement, and Principled Approach ···················································215

  2. Suggestions to Better End-of-Life Journey and the Experience of Death ···············································217

  3. Conclusion ·····································································································225


References ···························································································227 

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