Engaging with bereaved relatives: seeking their views about the quality of care provided to their family member in the last days of life

Dr Catriona Mayland is currently undertaking a five-year Yorkshire Cancer Research (YCR) Senior Clinical Research Fellowship with the University of Sheffield, United Kingdom. Here, she talks about assessing the quality of care provided in the last days of life and the valuable role of the bereaved relatives.

Dr Catriona Mayland.

Due to practical and ethical reasons, it is challenging to assess the quality of care provided to dying patients in the last days of their lives. Overcoming challenges, however, is something we thrive on within Palliative Care! It is essential to understand more about this important time. And it’s only by learning more that we can know how to improve care. One way to do this is to involve the patients’ families at an appropriate time after the death – asking what they thought about the care their family member received, either using a questionnaire or by interviewing.

The ‘Care Of the Dying Evaluation’ (CODETM) is a 42-item questionnaire, which asks bereaved relatives about the quality of care their family member received and their own level of support. CODETMwas originally developed in the UK, working alongside patient representatives and bereaved relatives at each step of the way. This has helped ensure that CODETMis asking about the important aspects of care and is clearly and sensitively worded. Within CODETM, there are questions about:

  • the control of pain and other symptoms
  • the care provided by doctors and nurses
  • involvement in decisions and whether important discussions were held e.g. about providing fluids and what to expect when someone is dying
  • emotional and spiritual support
  • information about the person completing the questionnaire and the person who died.

Additionally, there is space for the person completing CODETM to write more about their own personal experience so that they have the opportunity to ‘tell their story’.

Most recently, CODETM was used within the ‘International Care Of the Dying Evaluation’ (i-CODE) research study.

CODE group in Solstrand, Norway. (A list of all members of the project team is published at the end of this post).

What was the i-CODE study?

This research project involved seven European and South American countries – Argentina, Brazil, Germany, Norway, Poland, UK, and Uruguay. Within these countries, CODETM  was used to assess the quality of care in hospitals for dying cancer patients.

What did we do?

First, we undertook translation of the CODETM questionnaire into the different languages. Then, we tested the questionnaire with patient representatives and bereaved relatives to see if CODETMwas culturally suitable for use in the different countries. We did this by using ‘pre-testing methods’ i.e. asking the patient representatives and bereaved relatives whether question items were relevant, sensitively worded and clear in their meaning when translated.

Next, within the participating hospitals, we undertook a survey of the bereaved relatives to patients who had died from cancer. From 1,683 potential participants, more than 900 bereaved relatives participated in the study from 22 different hospitals. Overall, we are pleased to report this showed that the quality of care was good. Specific areas for improvement related to communication and providing better information and support.

Finally, within Argentina and Poland, specific work was undertaken with a focus to improve aspects of care perceived poorly by the bereaved relatives.

Where can you read more about this study?

The first part of our work was published in Palliative Medicine (in March 2019) and is available here. The paper demonstrates how we were able to engage with patients, public representatives and bereaved relatives across the seven different countries to help the development of the CODETM questionnaire.

Links and references

  1. iCODE study webpage – icode7.org
  2. Mayland CR, Lees C, Germain A et al. Caring for those who die at home: the use and validation of ‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives. BMJ Support Palliat Care. 2014 Jun;4(2):167-174. doi: 10.1136/bmjspcare-2013-000596.

The project team
Mayland Catriona Rachel (UK), Sigurdardottir Katrin (Norway), Hansen Marit Irene Tuen (Norway), Leppert Wojciech (Poland), Katarzyna Wolszczak (Poland), Garcia-Yanneo Eduardo (Uruguay), Tripodoro Vilma Adriana (Argentina), Goldraij Gabriel (Argentina), Weber Martin (Germany),  Gerlach Christina (Germany), Zambon Lair (Brazil), Passarini Juliana Nalin (Brazil), Saad Ivete Bredda (Brazil), Ellershaw John (UK), Ting Grace (UK), Haugen Dagny Faksvåg (Norway).

This work was supported by a grant from the ERANet-LAC 2nd Joint Call. Additionally, within the UK, funding was provided by Marie Curie and the Wellcome Trust Public Engagement fund. Dr Catriona R Mayland is currently funded by Yorkshire Cancer Research.

Join us in Palermo for the 11TH EAPC World Research Congress #EAPC2019

Catriona will be presenting In partnership with patients and the public: conducting the international ‘Care Of the Dying Evaluation’ (i-CODE) post-bereavement survey on Thursday 14 May at 14.45-15.00 during the ‘Bereavement session’ which takes place at 14.00 to 15.30 in Napoli (Hall 20). Visit the congress website and download the preliminary programme here.

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