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Courage to Live beyond the Boundary between Life and Death
-Introduction to Clinical Thanatology-

Michikazu Ono
Professor, Faculty of Human Sciences, Waseda University

The term-boundary between life and death-seems to be perceived realistically as an experience that is difficult to overcome after the Great East Japan Earthquake on March 11 of last year. Thoughts on how this painful experience has changed our individual way of understanding and thinking about how we die and how we live (our views of life and death) has not been well compiled so far. Situations that we feel are“difficult to overcome” in our lives may occur not only from actual death, but also in various scenes or from various factors.

Clinical thanatology aims at supporting those who are facing actual death, or experiences that are as painful as death-in other words, individual behaviors or thoughts as well as change in relationships with people surrounding them at the boundary between life and death, using approaches from both social studies-such as philosophy, religious study, ethics and sociology-and clinical studies utilized in practices such as various clinical medicines (psychiatry, palliative medicine, etc.), nursing science, pharmaceutical science, and clinical psychology. Clinical thanatology also aims at enabling not only professionals, but also patients and their family who are facing the boundary of live and death, to gain knowledge and skills that are vital to overcome the challenge through various experiences related to death, and making the best use of the wisdom of living that has accumulated over generations. It is also characterized by joint work of the social study side and the clinical medicine side to establish mechanisms to address the issues they are facing.

Fig. 1

Technical approaches and limitations for factors constituting “human death”

From the aspect of biological death, the factor constituting human death is the arrest of life activities. This event can be captured by cellular death, organ death, and somatic death. In general, as a method to determine somatic death, the arrest of the heartbeat, the arrest of respiration, and the loss of pupillary reflex have been established as the three signs of death. It is also necessary to understand that the emergence of brain death/organ transplant technology is beginning to shake the relationship between organ death and somatic death. The clinical state of brain death has appeared as part of the results of life-prolonging technologies, which intend to postpone somatic death for as long as possible. However, the conflict between the position that considers brain death as irreversible and the other that considers it as reversible has not been resolved. For example, the period from the determination of brain death to the three signs of death has been related to many medical factors such as treatment after the determination of brain death, disease that caused brain death, the patient's age, and the general conditions in reports of cases with long-term brain death. The possibility that this period is also influenced by the view of life and death as well as the social and economic conditions of the patient's family members and healthcare staff members are also being discussed. The effect of these social factors can be reduced to the minimum through the establishment of mechanisms such as the fixation of criteria for the determination of brain death and adherence to legal procedures. From the standpoint of clinical thanatology, the issue of how the patient's family members and related people should accept individual death of the patient who has been diagnosed as brain dead has not been resolved. Since it is difficult to provide such a concept as rational criteria to accept the life extension or the death of patients who have been diagnosed as brain dead, it is desirable that healthcare workers who are present at the scene, as well as family members and relatives who support the patient, confront the challenge with the aim of leading to some behaviors or conclusions by overlapping their own life stories.

The biological definition of life phenomena and death has also been discussed. There is no consensus in a precise sense. It is thus necessary to make efforts to form a social consensus through further multidirectional discussions about the consistency between these two types of criteria for the determination of death (socially/relatively agreed procedure for the determination of death [three signs of death] and criteria for the determination of brain death), not from the position that considers the phenomenon of death as scientifically absolute.

Change in the place of death and trend toward medicalization of death

As shown in the figure below, the place where Japanese people die has changed significantly from home (82.5%) in 1951 to hospital (79.6%) in 2004. Possible reasons for this dramatic change are: major improvement in the accessibility to healthcare services due to the introduction of the universal healthcare system, transition from medical practitioners to hospital medicine (progression of specialization/division), which is a structural change in the healthcare system, and the decreased number of home care personnel caused by the increased number of employed persons (salaried workers) and the trend toward the nuclear family, which is a change in the social structure (family system). These factors might have further led to the decrease of opportunities to experience home death and changed the environment surrounding life and death (conversion to the concept that hospital death is normal).

These social changes, which have been discussed as the phenomenon of the increasing invisibility of death, have provided a foundation for the criticism that the transition to hospitals for the place of death has led to the“enclosure” of death by healthcare, shifted the central actor from the family of the dead to the healthcare staff, and caused problems such as isolation of the patient during“the time of death” and suppression of suffering from“death.” There is a concern that these problems will lead to a situation where the reality of death is lost and sharing of actual experiences is decreased in a comprehensive way, and impair our capability to respond to realistic challenges in the long run from the standpoint of consumers.

Inconsistency between healthcare providers and patients about how death should be

The gap between healthcare providers and patients was studied-based on the results of a questionnaire about the desirable way of life common to Japanese people-to analyze the above situation. Among items desired by patients, there was little difference between patients and healthcare providers on“little pain,” while other items indicated a tendency for patient needs to be insufficiently fulfilled. In fact, it is difficult to establish a“sense of having completed my life,”“retaining consciousness,”“not being a burden on others,” and“being able to help others” as healthcare targets; these results suggest, however, the possibility that the medical treatment and care desired by patients are not available in the current healthcare environment.

As I have discussed above, there are various difficulties and challenges in the clinical scene of death. Clinical thanatology is expected to play a role in positioning the individual life stories (life history) of patients and family members as a foundation for dialogue in the specialized area of medical treatment and care and establishing mechanisms to allow mutual adjustment or intervention. There are two concepts for this purpose: 1) positive connection with people near you and 2) positive conveyance to people who you recognize. These attempts are expected to produce the courage to live beyond the challenge of life and death. Furthermore, not only interdisciplinary approaches that integrate these attempts but also aiming at establishing a place for joint work the standpoint of citizens should be emphasized the most.

Michikazu Ono
Professor, Faculty of Human Sciences, Waseda University

Born on November 6, 1953.
Professor, Department of Health Sciences and Social Welfare, Faculty of Human Sciences, Waseda University, Division of Palliative Medicine and Clinical Thanatology, Ph.D in medicine

Area of specialization:
Clinical thanatology, palliative medicine, medical quality assessment, risk communication

Academic background:
1979: Graduated from Tokyo Medical University
1984: Left the doctoral course of the Graduate School of Medicine, Tokyo Medical University

Career background:
June 1980: Worked as a resident in the Department of Surgery, Tokyo Medical University
April 1984: Worked in the Division of Neonatal Surgery, Shizuoka Children's Hospital
April 1985: Assistant, Department of Surgery, Tokyo Medical University
June 1988: Worked in the Department of Surgery, Toda Chuo General Hospital
October 1993: Studied abroad in the Department of Psychiatry, Memorial Sloan-Kettering Cancer Center, International Joint Research for the Transition Point of Treatment and Care
April 1994: Worked full-time in the newly opened outpatient palliative care department, Toda Chuo General Hospital
April 1997: Director, Department of Palliative Care, Toda Chuo General Hospital
October 1998: Part-time lecturer, Department of Surgery, Tokyo Medical University
April 2005: Part-time lecturer, Saitama Prefectural University-his current position, which he has held since April 2005
April 2007: Part-time lecturer, International University of Health and Welfare (holding this position concurrently)

Social activities:
•Executive director and chairman of the text editing committee, Japanese Society for Clinical Thanatology
•Director, member of the evaluation committee, chairman of the functional evaluation division, Hospice Palliative Care Japan
•Member of the working committee, Japan Council for Quality Health Care
•Member of the Ethics Committee, Kitasato University, etc.

•Guide to QoL survey and evaluation [QOL tyousa to hyouka no tebiki]
•Nursing care QoL books: palliative care [Kango QOL BOOKS kanwa kea]
•Morphine and palliative care questions 101 [Shitteokitai moruhine to kanwa kea shitsumon bako 101], etc.