Asking terminally ill patients about their preferences concerning place of care and death

Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD).

The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD.

Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c²-test.

Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85).

Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.