ARE BEREAVED FAMILY MEMBERS A VALID PROXY FOR A PATIENTS ASSESSMENT OF DYING

Objective: To compare assessments made retrospectively by bereaved fam ily members (or the nearest carer to the patient) with assessments mad e before death by palliative staff and, where available, by patients t hemselves or the family member. Methods: Setting-two palliative care s upport teams. Assessments-were recorded prospectively by team staff, p atients and their family members for consecutive patients referred, an d then were recorded retrospectively by family members during intervie w seven months after bereavement. Measures-seven items each rated 0 (b est) to 4 (worst) using standard definitions. The rater was asked to a verage the severity over one week. Analysis-ratings were tested for pe rcentage agreement, for Cohen's Kappa (which controls for chance agree ment) and for Spearman correlations. Results: Staff ratings and family members' retrospective ratings, which described the last week of life , were available for 35 patients. Six patients and seven family member s had also been interviewed shortly before the patient's death. The ma in problems identified by all raters were similar: family anxiety, sym ptom control, patient anxiety and pain control. For three items, pract ical aid, wasted time and communication, agreement was good-all cases except one were equal or within one score. However, problems were rare ly identified for these items. For the other four items: pain control, other symptom control, family anxiety and patient anxiety, there was little agreement, Cohen's Kappa ranged 0.05-0.22. Agreement for one it em (patient anxiety) was significantly improved if a patient had died at home. Comparison of ratings made by the family members before the d eath and seven months after bereavement suggests that family members a lter their assessments during bereavement. Conclusion: Retrospective a ssessments by bereaved family members may be valid for some items rela ted to service provision, but not as the sole assessment of a patient' s pain, symptoms or anxiety. We suggest that studies which rely on the se retrospective ratings should assess the validity of their responses and record more information about the mood and grief of the family me mber.