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.