HOW RELIABLE ARE RELATIVES RETROSPECTIVE REPORTS OF TERMINAL ILLNESS - PATIENTS AND RELATIVES ACCOUNTS COMPARED

To assess the accuracy of relatives' recollections of patients' termin al illness 71 out of 77 caring relatives were re-interviewed about 4 m onths after they and the patients had given regular interviews through out care. Current and retrospective ratings of problems and feelings h ave been compared for agreement, using the kappa index. Several volunt eered symptoms showed poor agreement, notably pain, anorexia and depre ssion (kappa = 0.03-0.21), but vomiting, dyspnoea and immobility ratin gs agreed moderately well (kappa = 0.43-0.68). Current ratings from pa tients' and relatives' were always in better agreement with each other than with the relatives' retrospective ratings. Bias sometimes altere d apparent prevalence; pain was described as more severe in retrospect , but weakness, malaise, depression and relatives' stress were under-r ated later. Ratings of ''discomfort only'' became less common for all symptoms retrospectively. The regular current assessments of patients' and relatives' emotional state also agreed only slightly with relativ es' follow-up accounts of depression but somewhat better for anxiety. Patients' stated knowledge of diagnosis, awareness and acceptance of d ying matched the relatives' retrospective assessments moderately well (kappa = 0.70, 0.50 and 0.41). This study and other available evidence indicate that relatives' retrospective reports of terminal illness, m easured against current ratings, are moderately reliable for some item s but can vary or be potentially misleading over other aspects, includ ing pain. This could affect evaluations of care. Copyright (C) 1996 El sevier Science Ltd