• Marc Tanghe, Nele Van Den Noortgate, Luc Deliens, Tinne Smets, Bregje Onwuteaka-Philipsen, Harriet Finne-Soveri, Lieve Van den Block, Ruth Piers, and PACE.
• End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent University, Ghent, Belgium. Electronic address: marc.tanghe@ugent.be.
• J Pain Symptom Manage. 2020 Aug 1; 60 (2): 362-371.e2.

ContextSymptom management is essential in the end-of-life care of long-term care facility residents.ObjectivesTo study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.MethodsA postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level.ResultsMean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.ConclusionThere is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.Copyright © 2020. Published by Elsevier Inc.

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