The landscape of distress in the terminally ill

Abstract

Understanding the complexities of distress and knowing who is most vulnerable isfoundational to the provision of quality, palliative end-of-life care. Although prior studieshave examined the prevalence of symptom distress among patients nearing death, thesestudies have tended to largely focus on physical and to a lesser extent, psychologicalchallenges. 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 distressin patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253patients receiving palliative care. Each PDI item is rated by patients to indicate the degree towhich they experience various kinds of end-of-life distress. Palliative care patients reported anaverage of 5.74 problems (standard deviation, 5.49; range, 0e24), including physical,psychological, existential, and spiritual challenges. Being an inpatient, being educated, andhaving a partner were associated with certain kinds of end-of-life problems, particularlyexistential distress. Spirituality, especially its existential or ??sense of meaning and purpose??dimension was associated with less distress for terminally ill patients. A better appreciationfor the nature of distress is a critical step toward a fuller understanding of the challengesfacing the terminally ill. A clear articulation of the landscape of distress, including insightregarding those who are most at risk, should pave the way toward more effective, dignityconservingend-of-life care.