The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients

Open end-of-life communication is especially important within the patient-family unit of care and can positively affect their medical, psychological, and relational outcomes. Nevertheless, end-of-life discussions are often perceived as difficult and avoided. To develop and validate the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI) to allow a systematic assessment of reasons why people shy away from end-of-life discussions. Patients with advanced cancer were recruited and completed the DEOLD-FI and measures of avoidance of cancer communication, quality of life and distress, and the experienced difficulty as well as the occurrence of end-of-life discussions. Standard item analyses and an exploratory factor analysis were conducted. Construct validity was analysed through associations between the DEOLD-FI and the aforementioned measures. Questionnaires were obtained from 112 participants (53% response rate; male 54%, mean age 64.9 years [range 33–94]). In the final 23-item version two factors were extracted: ‘emotional burden due to end-of-life discussions’ (α = 0.90) and “negative attitudes towards end-of-life discussions” (α = 0.91) explaining 69% of the variance (total scale α = 0.93). Construct validity was supported by its significant correlations with the reported difficulty in end-of-life discussions (r = 0.42) and avoidance of cancer communication (r = 0.40 to r = 0.46) and insignificant correlations with quality of life (r = -0.11), distress (r = 0.16), and physical well-being (r = 0.02). Those who had already engaged in end-of-life discussions showed significantly fewer communication barriers. Results provide evidence that the DEOLD-FI is a valid and reliable instrument for the assessment of difficulties in end-of-life discussions. Benefits for clinical practice and research are discussed. This article describes the development and validation of the Difficulties in End-of-Life Discussions-Family Inventory. Results showed good psychometric properties, indicating a reliable assessment of difficulties in end-of-life discussions between terminally ill patients and their family members, thus contributing to a deeper understanding of the avoidance of open end-of-life discussions.