Difficulties of Cancer Patients’ Relatives in End-of-Life Discussions: Validation of a Questionnaire

Despite the potential benefits and the desire for end-of-life communication, it rarely occurs in the familial context. Relatives play a significant role in the communication process; thus, it is crucial to understand the difficulties that they face. To develop and evaluate the relatives’ version of the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI-r) regarding its factor structure, reliability and validity. Relatives of patients with advanced cancer were recruited in a German hospital. The factor structure of the questionnaire was explored. Construct validity was examined through correlations between the DEOLD-FI-r and measures of avoidance of cancer communication, quality of life, distress, and experienced difficulty during end-of-life discussions. Additionally, we examined the group difference between those who had and had not engaged in the conversation. About 111 relatives completed the survey (mean age 55.5 years, 52% female). The final version of the DEOLD-FI-r contained 23 items (α = .92). The exploratory factor analysis resulted in three factors explaining 74% of the variance. Each factor described another dimension of potential communication barriers in end-of-life discussions: 1) Own emotional burden, 2) Relational and patient-related difficulties, 3) Negative attitudes. Construct validity was supported by correlations consistent with our hypotheses and less reported communication difficulty by those who had already talked about the end-of-life with their relative (t(106) = 5.38, P < .001, d = 0.8). The results indicate that the DEOLD-FI-r is a valid and reliable instrument for the systematic assessment of difficulties in family end-of-life communication. By focusing on relatives, it complements the already validated patient-version.