The experiential landscape of terminal illness


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Harvey Chochinov

University of Manitoba and Manitoba Palliative Care Research Unit, Canada

Abstract

The experiential landscape of terminal illness

Various things can influence the experience of nearing death. While prior studies have described the prevalence of symptom distress in the terminally ill, these have tended to focus on physical and, to a lesser extent, psychological challenges. Our research group has studied these issues extensively, using both qualitative and quantitative approaches. This presentation will present data from various studies, including details about a newly developed psychometric, coined the Patient Dignity Inventory (PDI). The PDI is a novel, reliable and now validated measure of end-of-life distress, which provides insights regarding the broad landscape of distress in patients who are terminally ill. A better appreciation for the nature of distress is a critical step towards a fuller understanding of the challenges facing the terminally ill. A clear articulation of these issues, including insight regarding those who are most at risk, should pave the way towards more effective, dignity-conserving end-of-life care.

One aspect of end of life distress is the waxing and waning of the will to live. This will be explored by reviewing various studies conducted by our research group. These studies have examined constructs such as desire for death, will to live, loss of dignity and expressed wishes for a hastened death. A clearer understanding of these issues from an empirical vantage-point should offer caregivers a clear and objective context within which to address end of life distress.