Proxy reporting in after-death interviews: the use of proxy respondents in retrospective assessment of chronic diseases and symptom burden in the terminal phase of life

Abstract

This study evaluates the quality of data obtained from after-death interviews with significant others of deceased older persons regarding the prevalence of chronic diseases and symptoms in the terminal phase of life. These data are compared with reports from physicians and earlier self-reports from the deceased person. There were significant increases in nonresponse and nonavailability of significant others for decedents who had been divorced or had never been married, thus introducing some selection bias. At the level of the total sample, significant others seem to give accurate information about the prevalence of chronic diseases when compared with self-reports and reports from physicians. At the level of the individual sample member, after-death interviews with significant others provide valid information for the assessment of the prevalence of malignant neoplasms, diabetes mellitus, chronic obstructive pulmonary disease and cerebrovascular disease, but not for osteo- and rheumatoid arthritis and artherosclerotic disease. At the level of the total sample, the prevalence of symptoms assessed by significant others did not differ greatly from the assessment made by physicians. However, at the level of the individual sample member, the validity of symptom assessment by significant others could not be supported by data obtained from the physicians. With regard to the type of significant others interviewed, children reported more symptoms than partners. The use of significant others in after-death interviews can be a valid method with regard to the assessment of chronic diseases and symptoms on a group level. On an individual level this can be concluded only for chronic diseases with clearly observable consequences.

Comfort in the last 2 weeks of life: relationship to accessing palliative care services

“…Proxy reports are frequently used in palliative care research due to the difficulties encountered in research engaging people with a life-limiting illness [2,4,11,31,33]. Studies have examined the accuracy of retrospective reports by proxies, comparing reports of patients prior to death with those of their relatives after death [4,10,22,27,31,33].…”

“…All of these factors, potentially in a composite measure, should be included in future work seeking to understand levels of comfort at the end of life. Congruence between proxies and patients is greater for issues where there is an observable consequence [16], such as service utilisation, functional ability or preferred place of care [16,22,27,31,45]. Proxies living with patients have been found to have a higher level of agreement [39] but caregiver strain, unrealised expectations and poor caregiver coping may be associated with some incongruent reports [39,42,47] including reporting caregiver distress as patients' physical pain [47].…”

Frailty and Body Mass Index as Predictors of 3-Year Mortality in Older Adults Living in the Community

“…Second, death was not ascertained by death certificates or registry data. However, proxy respondents have been reported to provide reliable information on deaths and observable events at the end of life [30,31]. Data on cause of death were not available for analysis.…”

Prevalence of pain in patients with cancer: a systematic review of the past 40 years

“…It is well known that these two methods can result in prevalence figures that differ from data obtained directly from the patient [26][27][28][29][30][31][32]. Although the authors stated that it was not possible to carry out a meta-analysis owing to the variation in measurements, they reported combined weighted mean prevalences of pain in patients with all/various stages versus patients with metastatic or terminal disease.…”