Congruence between preferred and actual place of care and death among Danish cancer patients

Abstract

Background: Meeting patient’s preferences is an important outcome in palliative care. No Scandinavian study has reported systematically collected preferences from patients regarding place of care (POC) and place of death (POD). The extent of possible incongruence between patients’ preferences and reality remains unknown. Aim: The aim of this study was to describe patients’ preferred POC and POD and changes in preferences over time and to evaluate congruence between preferences and reality. Furthermore, the aim was to search for predictive factors regarding patients’ wishes and fulfilment of these. Method: This is a prospective interview and questionnaire study. Setting/participants: The study was conducted in the former Aarhus County, Denmark and 96 end-stage cancer patients participated. Results: Of the patients, who stated a preference, 84% preferred home care and 71% preferred home death. A positive association between living with a partner and both wishing for home care and home death was observed (prevalence ratio (PR): 1.66 (95% confidence intervals (CI): 1.07, 2.58), p = 0.02 and PR: 2.33 (95% CI: 1.14, 4.77), p = 0.02, respectively). Marked changes in preferences were observed. Overall, preferences were met for approximately half of the patients, although kappa values were low ( κ=0.132 for POC and κ=0.034 for POD).We found a significant association between being cared for in the preferred place and having contact with a palliative care team (PR: 2.01 (95% CI: 1.02, 3.98), p = 0.045). Conclusion: Regular discussions with patients on this subject are needed. Social and professional support is of importance in meeting patients’ preferences. Larger scaled studies and research focusing on meeting patients’ preferences are needed.