Comparison of Proxy Ratings of Main Family Caregivers and Physicians on the Quality of Dying of Terminally Ill Cancer Patients

Abstract

The observed agreement between the two proxies was good, except the psychological aspects, demonstrating the validity of proxy rating of patients between physicians and main caregivers. More communications toward the end-of-life issues should be encouraged and conducted in this population. Further research is needed to determine how to best use proxy assessments to evaluate the quality of the dying process.

Cancer patient autonomy and quality of dying-a prospective nationwide survey in Taiwan

“…The reliability and validity of the GDS in Taiwanese palliative care units have been well discussed in detail , and the instruments have been used and their results published in many journals . Cronbach's α was used to assess the internal consistency of this good death measure in the present study and was found to be 0.71 for the five domains.…”

Concordance between Experiences of Bereaved Relatives, Physicians, and Nurses with Hospital End-of-Life Care: Everyone Has Their “Own Truth”

“…A poor concordance of perspectives on end-of-life care was also found in a few other studies [13,22,23]. Different stakeholders seem to experience their "own truth" and probably there is no "one truth. "…”

“…These studies show a tendency of relatives to overestimate the severity of symptoms in comparison to patients' self-reports, whereas nurses and physicians tend to underestimate them [10,12,16,[19][20][21]. Only a few small studies have compared the experiences of the dying phase of relatives and HCPs, showing low to moderate concordance between these groups [13,22]. In the national audit of end-of-life care in Irish hospitals physicians evaluated care more positively than relatives, whereas nurses reported intermediate opinions [23].…”

The quality of dying and death measurement instruments: A systematic psychometric review

“…A retrospective carer proxy report (healthcare providers and family care providers) was used to assess QoD in most studies. In this regard, most studies used an informal carer to evaluate QoD (Cagle et al., ; Curtis et al., ; Downey, Curtis, Lafferty, Herting, & Engelberg, ; Heckel et al., ; Iranmanesh et al., ; Miyashita, Sanjo, Morita, Hirai, & Uchitomi, ; Miyashita et al., ; Mularski, Curtis, Osborne, Engelberg, & Ganzini, ; Shin et al., ), four studies used healthcare providers to assess QoD (Cheng et al., ; Cohen et al., ; Hodde, Engelberg, Treece, Steinberg, & Curtis, ; Yao et al., ), five studies used both informal carers and healthcare providers to assess QoD (Cheng, Dy, Huang, Chen, & Chiu, ; Curtis et al., ; Levy et al., ; Munn et al., ), one study evaluated QoD by using the general public and healthcare providers (Haishan, Hongjuan, Tieying, & Xuemei, ) and one study used children 12–14 years of age (Yang et al., 2012).…”

“…Four questionnaires were used to assess QoD in patients receiving palliative care in a hospice or hospital (QODD, QoD Hospice, GDI and GDS) (Cagle et al., ; Cheng et al., , ; Downey et al., ; Heckel et al., ; Miyashita et al., ; Shin et al., ; Yao et al., ). One questionnaire was used to evaluate QoD in patients in oncology units (Iranmanesh et al., ; Miyashita et al., ).…”