Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents

Abstract

Background: To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life. Aim: To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents. Design: Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression. Setting/participants: A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London. Results: Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups. Conclusion: Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care.