Murata Hisayuki, Morita Tatsuya
School of Human Culture, Kyoto Notredame University, Kyoto, Japan.
Palliat Support Care. 2006 Sep;4(3):279-85. doi: 10.1017/s1478951506060354.
Although the relief of psycho-existential or spiritual suffering is one of the most important roles of palliative care clinicians, lack of an accepted conceptual framework leads to considerable confusion in research in this field. The primary aim of this article is to illustrate the process of developing a conceptual framework by the Japanese Task Force as the initial step of a nationwide project.
We used consensus-building methods with 26 panel members and 100 multidisciplinary peer reviewers. The panel consisted of six palliative care physicians, six psychiatrists, five nursing experts, four social workers or psychologists, two philosophers, a pastoral care worker, a sociologist, and an occupational therapist. Through 2 days of face-to-face discussion and follow-up discussion by e-mail, we reached a consensus.
The group agreed to adopt a conceptual framework as the starting point of this study, by combining the empirical model from multicenter observations, a theoretical hypothesis, and good death studies in Japan. We defined "psycho-existential suffering" as "pain caused by extinction of the being and the meaning of the self". We assumed that psycho-existential suffering is caused by the loss of essential components that compose the being and the meaning of human beings: loss of relationships (with others), loss of autonomy (independence, control over future, continuity of self), and loss of temporality (the future). Sense of meaning and peace of mind can be interpreted as an outcome of the psycho-existential state and thus the general end points of our interventions. This model extracted seven categories to be intensively studied in the future: relationship, control, continuity of self, burden to others, generativity, death anxiety, and hope.
A Japanese nationwide multidisciplinary group agreed on a conceptual framework to facilitate research in psycho-existential suffering in terminally ill cancer patients. This model will be revised according to continuing qualitative studies, surveys, and intervention trials.
尽管缓解心理-存在或精神痛苦是姑息治疗临床医生最重要的职责之一，但缺乏一个被广泛接受的概念框架导致该领域的研究存在相当大的混乱。本文的主要目的是阐述日本特别工作组构建概念框架的过程，这是一个全国性项目的第一步。
我们运用了共识构建方法，有26名专家小组成员和100名多学科同行评审员参与。该小组由六名姑息治疗医生、六名精神科医生、五名护理专家、四名社会工作者或心理学家、两名哲学家、一名牧师关怀工作者、一名社会学家和一名职业治疗师组成。通过为期两天的面对面讨论以及后续的电子邮件讨论，我们达成了共识。
该小组同意采用一个概念框架作为本研究的起点，它结合了多中心观察的实证模型、一个理论假设以及日本的善终研究。我们将“心理-存在痛苦”定义为“因自我的存在和意义的消逝而产生的痛苦”。我们假定心理-存在痛苦是由构成人类存在和意义的基本要素的丧失所导致的：人际关系的丧失（与他人的关系）、自主性的丧失（独立性、对未来的掌控、自我的连续性）以及时间性的丧失（未来）。意义感和内心的平静可被视为心理-存在状态的结果，因此也是我们干预措施的总体终点。该模型提炼出了七个未来需要深入研究的类别：人际关系、掌控、自我连续性、对他人的负担、繁衍力、死亡焦虑和希望。
一个日本全国性的多学科小组就一个概念框架达成了共识，以促进对晚期癌症患者心理-存在痛苦的研究。这个模型将根据持续的定性研究、调查和干预试验进行修订。
