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Survey of bereaved relatives developed in Liverpool could help improve care for the dying

Adding a post-bereavement survey to the National Care of the Dying Audit - Hospitals could be a valuable way to help improve care, according to a research paper in the BMJ Supportive and Palliative Care.

The 'Care Of the Dying Evaluation' (CODE) questionnaire was first developed in 2011 by Dr Catriona Mayland, Honorary Senior Clinical Lecturer at the Marie Curie Palliative Care Institute Liverpool, University of Liverpool and Consultant in Palliative Medicine at the Royal Liverpool and Broadgreen University Hospitals NHS Trust.

The questionnaire was added as an additional component to the 2013/2014 National Care of the Dying Audit - Hospitals (NCDAH), led by the Royal College of Physicians and Marie Curie Palliative Care Institute Liverpool, to evaluate the quality of care provided to dying patients and their families in acute hospitals, from the perspective of bereaved relatives.

The NCDAH found significant variations in care across hospitals in England and that major improvements need to be made to ensure better care for dying people, and better support for their families, carers, friends and those important to them.

858 bereaved relatives returned a completed CODE questionnaire.

On the whole, the majority of participants reported good or excellent care, with patients' symptoms generally perceived to be well controlled and 769 (91%) of participants reporting that either no pain was present or only there 'some of the time.

However, a small but significant minority perceived poor quality of patient care.

Clear and timely communication was identified as an urgent issue to be addressed, with unmet information needs being a recognised area for improvement, for example, 230 (29%) reporting that having a discussion about hydration would have been beneficial.

The BMJ Supportive and Palliative Care paper concludes that adopting a post-bereavement survey appears to be a feasible, acceptable and valuable addition to the national audit.

Dr Catriona Mayland said, "CODE helps us understand the real experiences of bereaved relatives and their loved ones and identify areas that would improve the experience of care for the dying. This is a significant and helpful addition to an audit of patient documentation for care for the dying, which if continued can make a real contribution to improving quality of care."

Dr Stephen Mason and Dr Catriona Mayland from the Marie Curie Palliative Care Institute, University of Liverpool have also recently been awarded a Wellcome Trust Public Engagement Grant to support public engagement events to further develop CODE.

The paper can be accessed online at: http://spcare.bmj.com/cgi/content/abstract/bmjspcare-2014-000810