• Liv Betker, Katharina Nagelschmidt, Nico Leppin, KnorrenschildJorge RieraJRDepartment of Internal Medicine, Division Haematology and Oncology (R.K.), University Hospital of Giessen and Marburg, Marburg Site, Germany., Christian Volberg, Daniel Berthold, Ulf Sibelius, Winfried Rief, Antonia Barke, Pia von Blanckenburg, and Carola Seifart.
• Department of Clinical Psychology and Psychotherapy (L.B., K.N., N.L., W.R., P.V.B.), Philipps-University Marburg, Marburg, Germany. Electronic address: liv.betker@uni-marburg.de.
• J Pain Symptom Manage. 2021 Sep 1; 62 (3): e130-e138.

ContextOpen 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.ObjectivesTo 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.MethodsPatients 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.ResultsQuestionnaires 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.ConclusionResults 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.Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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