Non-somatic Suffering in Palliative Care: A Qualitative Study on Patients’ Perspectives

Abstract

Objectives: Suffering is intimately linked to the experience of illness, and its relief is a mandate of medicine. Advances in knowledge around terminal illness have enabled better management of the somatic dimension. Nevertheless, there is what can be called “non-somatic” suffering which in some cases may take precedence. Inspired by Paul Ricoeur's thinking on human suffering, our aim in this qualitative study was to better understand the experience of non-somatic suffering. Methods: Semi-structured interviews were conducted with 19 patients. The results were qualitatively analyzed following a continuous comparative analysis approach inspired by grounded theory. Results: Three key themes synthesize the phenomenon: “the being enduring the suffering”, “the being whose agency is constrained”, and “the being in relationship with others.” The first describes what patients endure, the shock and fears associated with their own finitude, and the limits of what can be tolerated. The second refers to the experience of being restricted and of mourning the loss of their capacity to act. The last describes a residual suffering related to their interactions with others, that of loneliness and of abandoning their loved ones, two dimensions that persist even when they have accepted their own death. Conclusions: Non-somatic suffering can be multifarious, even when minimized by the patient. When evaluating suffering, we must keep in mind that patients can reach a “breaking point” that signals the state of unbearable suffering. In managing it, we probably need to make more room for family and friends, as well as a posture of caring based more on presence and listening.