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How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?
  1. Catriona Rachel Mayland1,
  2. Helen Mulholland1,
  3. Maureen Gambles1,
  4. John Ellershaw1 and
  5. Kevin Stewart2
  1. 1Marie Curie Palliative Care Institute Liverpool (MCPCIL), Cancer Research Centre, University of Liverpool, Liverpool, UK
  2. 2Clinical Effectiveness and Evaluation Unit, Royal College of Physicians, London, UK
  1. Correspondence to Dr Catriona Rachel Mayland, Marie Curie Palliative Care Institute Liverpool (MCPCIL), Cancer Research Centre, University of Liverpool, 200 London Road, Liverpool L3 9TA, UK; catriona.mayland{at}liverpool.ac.uk

Abstract

Background The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire.

Aim Within the context of the NCDAH audit, to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives.

Design Postbereavement survey to bereaved relatives.

Setting/participants For acute hospitals wishing to participate, consecutive ‘expected’ adult deaths occurring between 1 May and 30 June 2013 were identified and the CODE questionnaire was sent to the next-of-kin.

Results From 3414 eligible next-of-kin, 95 (2.8%) were excluded due to being involved in a complaint procedure and 1006 (29.5%) due to insufficient next-of-kin details. From the remaining 2313 potential participants, 858 returned a completed CODE questionnaire (37.1% response rate). Generally, symptoms were perceived to be well controlled with 769 (91%) participants reporting that either no pain was present or only there ‘some of the time’. Unmet information needs, however, was a recognised area for improvement, for example, 230 (29%) reporting having a discussion about hydration would have been beneficial.

Conclusions Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.

  • post-bereavement survey
  • proxy
  • quality of healthcare
  • Terminal care
  • Service evaluation

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors CRM was involved with the conception, design and conduct of the study, including the development of the CODE questionnaire, providing expert advice regarding the conduct of the bereaved relatives’ survey, wrote the statistical analysis plan and drafted and revised the paper. She is the guarantor. HM was involved with the conception, design and conduct of the study, cleaned and analysed the data, and revised the paper. MG was involved with the conception, design and conduct of the study, reviewed the data analysis, and revised the paper. JE was involved with the conception and design of the study, and revised the paper. KS was involved with the conception and design of the study, and revised the paper. All authors gave final approval of the version to be published.

  • Disclaimer Data used in this report were supplied by the National Care of the Dying Audit for Hospitals which was commissioned by Marie Curie and Public Health England and managed by CEEU, part of the Royal College of Physicians.

  • Competing interests None declared.

  • Patient consent No.

  • Ethics approval The NCDAH concurs with the definition of audit as stipulated by the Health Research Authority and as such, ethical approval was not required.17 Participating sites of the Local Survey were advised to ensure the process was compliant with their local Quality Governance Framework.

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

  • Data sharing statement As this was not a clinical trial, routine data sharing would not be undertaken. However, anonymised data would be available for on request from the Royal College of Physicians.

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