title: 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. 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.
authors.affiliation: Manitoba Palliative Care Research Unit, University of Manitoba, Manitoba, Canada. harvey.chochinov@cancercare.mb.ca
authors.forename: Harvey Max
authors.initials: HM
authors.lastname: Chochinov
authors.forename: Thomas
authors.initials: T
authors.lastname: Hassard
authors.forename: Susan
authors.initials: S
authors.lastname: McClement
authors.forename: Thomas
authors.initials: T
authors.lastname: Hack
authors.forename: Linda J
authors.initials: LJ
authors.lastname: Kristjanson
authors.forename: Mike
authors.initials: M
authors.lastname: Harlos
authors.forename: Shane
authors.initials: S
authors.lastname: Sinclair
authors.forename: Alison
authors.initials: A
authors.lastname: Murray
mesh_terms: D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000523:psychology; D011594:Psychometrics; D011788:Quality of Life; D012297:Right to Die; D013315:Stress, Psychological / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*