Promoting Research Literacy for Improved Patient Outcomes

The Landscape of Distress in the Terminally Ill

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among 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 (standard deviation, 5.49; range, 0e24), 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 toward 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 toward more effective, dignity-conserving end-of-life care.