PMID: 7514313Feb 1, 1994Paper

Are bereaved family members a valid proxy for a patient's assessment of dying?

Social Science & Medicine
I HigginsonM McCarthy

Abstract

To compare assessments made retrospectively by bereaved family members (or the nearest carer to the patient) with assessments made before death by palliative staff and, where available, by patients themselves or the family member. SETTING--two palliative care support teams. ASSESSMENTS--were recorded prospectively by team staff, patients and their family members for consecutive patients referred, and then were recorded retrospectively by family members during interview seven months after bereavement. MEASURES--seven items each rated 0 (best) to 4 (worst) using standard definitions. The rater was asked to average the severity over one week. ANALYSIS--ratings were tested for percentage agreement, for Cohen's Kappa (which controls for chance agreement) and for Spearman correlations. Staff ratings and family members' retrospective ratings, which described the last week of life, were available for 35 patients. Six patients and seven family members had also been interviewed shortly before the patient's death. The main problems identified by all raters were similar: family anxiety, symptom control, patient anxiety and pain control. For three items, practical aid, wasted time and communication, agreement was good--all cases except one ...Continue Reading

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