Please use this identifier to cite or link to this item: http://hdl.handle.net/1959.3/192561

Title

The landscape of distress in the terminally ill

Author(s)

Chochinov, Harvey Max;  Hassard, Thomas Hassard;  McClement, Susan;  Hack, Thomas;  Kristjanson, Linda J.;  Harlos, Mike;  Sinclair, Shane;  Murray, Alison

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.

Publication type

Journal article

Source

Journal of Pain and Symptom Management, Vol. 38, no. 5 (Nov 2009), pp. 641-649

Publication year

2009

FOR Code(s)

1117 Public Health and Health Services

Keyword(s)

Distress;  Palliative care;  Patient dignity inventory;  Terminal care;  Terminal illness

Publisher

Elsevier

ISSN

0885-3924

Publisher URL

http://dx.doi.org/10.1016/j.jpainsymman.2009.04.021

Copyright

Copyright © 2009 U.S. Cancer Pain Relief Committee.

Peer reviewed