Elsevier

Social Science & Medicine

Volume 43, Issue 8, October 1996, Pages 1229-1236
Social Science & Medicine

How reliable are relatives' retrospective reports of terminal illness? Patients' and relatives' accounts compared

https://doi.org/10.1016/0277-9536(95)00437-8Get rights and content

Abstract

To assess the accuracy of relatives' recollections of patients' terminal illness 71 out of 77 caring relatives were re-interviewed about 4 months after they and the patients had given regular interviews throughout care. Current and retrospective ratings of problems and feelings have been compared for agreement, using the κ index. Several volunteered symptoms showed poor agreement, notably pain, anorexia and depression (κ = 0.03−0.21), but vomiting, dyspnoea and immobility ratings agreed moderately well (κ = 0.43−0.68). Current ratings from patients' and relatives' were always in better agreement with each other than with the relatives' retrospective ratings. Bias sometimes altered apparent prevalence; pain was described as more severe in retrospect, but weakness, malaise, depression and relatives' stress were under-rated 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 relatives' follow-up accounts of depression but somewhat better for anxiety. Patients' stated knowledge of diagnosis, awareness and acceptance of dying matched the relatives' retrospective assessments moderately well (κ = 0.70, 0.50 and 0.41). This study and other available evidence indicate that relatives' retrospective reports of terminal illness, measured against current ratings, are moderately reliable for some items but can vary or be potentially misleading over other aspects, including pain. This could affect evaluations of care.

References (9)

There are more references available in the full text version of this article.

Cited by (123)

  • Dying in Germany - Unfulfilled needs of relatives in different care settings

    2012, Journal of Pain and Symptom Management
    Citation Excerpt :

    Beyond that, the relatives' subjective impression may not meet the objective situation. High expectations and emotional distress may lead to a distorted perception of reality, and, therefore, may interfere with serious efforts on the part of health care professionals.42,43 Nevertheless, the high rates of unfulfilled needs of so many relatives across all care settings as demonstrated in our study indicate that their views should be taken seriously.

  • Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis

    2010, Journal of Pain and Symptom Management
    Citation Excerpt :

    We asked these caregivers to recall details of discussions that took place many years before the interview. Recall of terminal illness by relatives has been reported in the shorter term, 28 and it is reported that proxies’ perceptions of patient’ symptoms are less reliable than for other aspects of quality of care at the end of life,29 but bereavement studies yielding reliable data about symptoms have been conducted up to 10 years after death.21,30 Because of concerns about recall bias, we compared recalled events to factual demographic information and disease-specific information previously abstracted from medical records and found concordance.

  • The Quality of Dying and Death Questionnaire (QODD): Empirical Domains and Theoretical Perspectives

    2010, Journal of Pain and Symptom Management
    Citation Excerpt :

    First, the QODD relies on proxy respondents and their retrospective evaluations. Although retrospective assessment offers several advantages—among them a more precise mapping of outcomes to a known end-of-life period and a reduction in burden (or missing data) through avoiding data collection during the last phases of illness—it also introduces concerns about reliability and validity related to inaccurate recall, reinterpretation in the light of new information, and the effects of bereavement.23,60–62 Bereavement can have variable and unpredictable effects on questionnaire responses, sometimes more accurately reflecting the emotional state of the respondent than the experience of the decedent, and may change over the course of the bereavement period.60

View all citing articles on Scopus
View full text