Regaining Autonomy in a Holding Environment: Patients’ Perspectives on the Existential Communication with Physicians When Suffering from a Severe, Chronic Illness: A Qualitative Nordic Study

Patients experience existential themes as pivotal in their lives, in order to be able to live with a severe, chronic illness; however, physicians report a hesitative approach to existential communication. The current study investigated Nordic patients’ experiences of existential communication with their physicians related to the treatment of multiple sclerosis or chronic pain. Semi-structured interviews with 23 patients were analyzed following Interpretative Phenomenological Analysis. Physicians focusing on medical aspects at the expense of psychological and existential aspects of being ill was experienced by patients as challenging their treatment and well-being. For making a shared decision with the physician on their treatment, patients needed a transition from being dependent to being autonomous. A holding environment and existential communication about transitional objects such as relationships with something bigger than themselves, as nature or religion, supported this autonomy. The analysis showed that existential communication not only supported patients in developing and regaining autonomy but also functioned as a moderator for illness-related distress, as a prevention of withdrawal from treatment, and as significant for patients in relation to living with chronic illness. Further education in existential communication is desirable, to support physicians integrating existential dimensions in consultations and shared decision-making with patients suffering from a severe, chronic illness.