Background and purpose: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
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