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Original research
Quality of cancer end-of-life care: discordance between bereaved relatives and professional proxies
  1. Elisabetta Bertocchi1,
  2. Giovanna Artioli1,
  3. Elisa Rabitti2,
  4. Gabriele Bedini3,
  5. Silvia Di Leo2,
  6. Nuria Maria Asensio Sierra4,
  7. Luca Braglia5 and
  8. Massimo Costantini6
  1. 1 Palliative Care Unit, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  2. 2 Psycho-Oncology Unit, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  3. 3 Casa Madonna dell'Uliveto Hospice, Albinea, Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  4. 4 Medicina Oncologica, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  5. 5 Research and Statistics Infrastructure, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  6. 6 Scientific Directorate, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy
  1. Correspondence to Dr Massimo Costantini, Scientific Directorate, Azienda Unità Sanitaria Locale di Reggio Emilia, Reggio Emilia, Emilia-Romagna, Italy; Massimo.costantini{at}ausl.re.it

Abstract

Background Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives.

Aim This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients’ death.

Design In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin’s concordance correlation coefficient, Cohen’s kappa, overall concordance correlation coefficient and Fleiss’ kappa.

Setting/participants We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy.

Results We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; −0.04 to 0.44), between relatives and nurses (+0.05; −0.39 to +0.47), and between relatives and physicians (+0.25; −0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales.

Conclusions The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.

  • terminal care
  • hospital care
  • cancer

Data availability statement

Data are available on reasonable request. Data were obtained directly from interviewed using paper forms which were entered into an anonymised database. Anonymised data are available for external researchers on request.

https://doi.org/10.1136/bmjspcare-2019-002108

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    Data availability statement

    Data are available on reasonable request. Data were obtained directly from interviewed using paper forms which were entered into an anonymised database. Anonymised data are available for external researchers on request.

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    Footnotes

    • Contributors MC, SDL and EB contributed to the concept/design of the work. EB, GA, GB, ER and NMAS collected data. LB analysed the data. All the authors interpreted the results. EB and LB drafted the article. All the remaining authors revised it. All the authors approved the version to be published and are responsible for appropriate portions of the content.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.