Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey


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Context: Symptom management is essential in the end-of-life care of long-term care facility residents. Objectives: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. Methods: A 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. Results: Mean 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. Conclusion: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.

Original languageEnglish
Pages (from-to)362-371.e2
JournalJournal of Pain and Symptom Management
Issue number2
Publication statusPublished - Aug 2020


  • Nursing home
  • end-of-life
  • older people
  • pain
  • palliative care
  • symptom burden

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