How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?

Catriona Rachel Mayland, Helen Mulholland, Maureen Gambles, John Ellershaw, Kevin Stewart, Catriona Rachel Mayland, Helen Mulholland, Maureen Gambles, John Ellershaw, Kevin Stewart

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.

Keywords: Service evaluation; Terminal care; post-bereavement survey; proxy; quality of healthcare.

Conflict of interest statement

Competing interests: None declared.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Figures

Figure 1
Figure 1
(National) Case note review data for May 2013.
Figure 2
Figure 2
(National) Analysis of code survey questionnaire: 1 May–31 July 2013.

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