Towards a re-conceptualisation of the management of distress in palliative care patients: the self-integrity model

Introduction: Distress is an important problem in palliative care. However, current models of clinical practice emphasise symptom-focused assessment of need, raising problems with integrating complex, and potentially conflicting, assessments of experience. An alternative perspective views distress as the result of the disruptive impact of illness on people's efforts to continue living their daily lives. We explored whether this account of distress may offer new insights into models of clinical care. Subjects and methods: Qualitative, phenomenographic analysis of interviews with a purposive sample of 19 adults with advanced cancer (eight men, 11 at high risk of depression) to explore experiences of distress in the context of on-going efforts of daily living. Results: Distress resulted from threats to aspects of themselves which mattered most to people. By achieving a balance between these disruptive effects and individual supportive capacity, most people were able to maintain continuity of daily life. Distress was identified by some as a productive emotion driving change. However, exhaustion undermined this self-capacity leading to fracturing of daily life, profound distress, and the need for external help to restore daily living. This is summarised in our self-integrity model (SIM). Conclusions: Understanding distress in the context of the effort of daily life, rather than individual symptoms, may support a holistic assessment of need; the assessment process itself acting as a support for self-agency. A clinical trial of symptom-based versus SIM-informed assessment of need could support development of an individual-focused, holistic assessment of need.