The landscape of distress in the terminally ill

J Pain Symptom Manage. 2009 Nov;38(5):641-9. doi: 10.1016/j.jpainsymman.2009.04.021. Epub 2009 Aug 26.


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, 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 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Female
  • Humans
  • Male
  • Palliative Care / psychology
  • Psychometrics
  • Quality of Life
  • Right to Die
  • Stress, Psychological / psychology*
  • Terminal Care / psychology*