Symptom assessment in the dying: family members versus healthcare professionals

Symptom management and support of the family members (FMs) are considered essential aspects of palliative care. During end of life, patients are often not able to self-report symptoms. There is little knowledge in the literature of how healthcare professionals (HCPs) assess symptoms compared with FMs. The objective was to compare the assessment of symptoms and symptom relief during the final week of life between what was reported by FMs and what was reported by HCPs.

Data from the Swedish Register of Palliative Care from 2021 and 2022 were used to compare congruity of the assessments by the FMs and by HCPs regarding occurrence and relief of three symptoms (pain, anxiety and confusion), using Cohen's kappa.

A total of 1131 patients were included. The agreement between FMs and HCPs was poor for occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety (kappa 0.30). When agreeing on a symptom being present, agreement on relief of that symptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trend was that HCPs more often rated occurrence of pain and anxiety, less often occurrence of confusion and more often complete symptom relief compared with the FMs.

The views of FMs and HCPs of the patients' symptoms differ in the end-of-life context, but both report important information and their symptom assessments should be considered both together and individually. More communication between HCPs and FMs could probably bridge some of these differences.