The Landscape of Distress in the Terminally Ill

Abstract

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. While prior studies have examined the prevalence of symptom distress amongst patients nearing death, these studies have tended to largely focus on physical and to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill. The PDI, a 25-item self report, was administered to 253 patients receiving palliative care. Each PDI item is rated by patients to indicate the degree to which they experience various kinds of end-of-life distress. Palliative care patients reported an average of 5.74 problems (SD 5.49; range=0–24), including physical, psychological, existential and spiritual challenges. Being an inpatient; being educated and having a partner were associated with certain kinds of end-of-life problems, particularly existential distress. Spirituality, especially its existential or ‘sense of meaning and purpose’ dimension was associated with less distress for terminally ill patients. A better appreciation for the nature of distress is a critical step towards a fuller understanding of the challenges facing the terminally ill. A clear articulation of the landscape of distress, including insight regarding those who are most at risk, should pave the way towards more effective, dignity-conserving end-of-life care.