Deathbed Etiquette Guide - support for being at the bedside of the person you love
Aims
The Guide provides information, advice and reassurance to those accompanying loved ones in the final days of life. We created the original guide in 2019 and then a COVID-19 version.
Overview
Uncertainty about what to expect when a loved one is dying can lead to stress and anxiety for those at the bedside of a dying relative or friend. Additional fear and uncertainty generated during the COVID-19 pandemic, in which many people were prevented from being present at the death of loved ones, may also lead to more complex grief.
The Guide to Deathbed Etiquette, created by St Mary’s University’s Art of Dying Well in collaboration with Lancaster University and three hospices in Northern England, aims to address this need. A compact and easy-to-read leaflet, the Guide provides information, advice and reassurance to those accompanying loved ones in the final days of life. Originally created in 2019, a version updated for COVID times was launched.
Following widespread media and online interest in both versions of the Guide, there was a need to formally evaluate different views on the Guide and how it might best be used.
Collaborating with Professor in Communication and Politics, St Mary’s University, Twickenham, Karen Sanders, we have undertaken analysis of the online newspaper comments and twitter comments. We have undertaken individual and focus group interviews with healthcare professionals to understand their views regarding using the Guide.
Results and Outcomes
Tab Content: For Partners and Engagement
Margaret Doherty, Director, The Art of Dying Well - St Mary’s University:
A multidisciplinary team worked together to create the deathbed etiquette guide. Lancaster University Medical School; hospices, the Art of Dying Well, communications and design specialists and people whose loved ones had died in different settings were all involved in its development. Inclusive design led to the creation of a guide which would be useful to frontline practitioners and those who find themselves at the bedside of a dying loved one. It also led to it becoming a story in broadcast and mainstream news media and its use in national and international healthcare settings.
Rev. Paul Berry | Chaplain & Spiritual Care Co-Ordinator Trinity Hospice, Blackpool:
I’m extremely grateful to The Art of Dying Well for providing their easy-to-access website packed with very important questions around death and dying and links to really helpful content.
The ‘Deathbed Etiquette’ handout card is a much-needed resource to give to families of loved ones who are approaching death, giving clear and helpful practical advice such as what to expect and how best they can be a good support, as well as addressing their own potential feelings.
Jo Elverson, St Oswald’s Hospice:
The COVID-19 pandemic has challenged us all professionally and our staff team have been keen to find new ways to support the friends and family members of patients reaching the end of their life. Developing the Guide to Deathbed Etiquette has encouraged conversations among staff and helped us to reflect on our own practice. Sadly, even when close family were able to visit patients and access support from end of life care professionals, wider circles of friends may not have been able to do this and may have had unanswered questions. The Deathbed Etiquette offers a resource for these people if they are experiencing distress about death and dying.
Coming from a hospice that is relatively new to research, the opportunity to collaborate with experienced researchers, media experts and clinicians on this work has been invaluable and we look forward to more opportunities for similar joined up working.
Tab Content: For Academics
It is helpful to work with different stakeholders. Working with the Centre of Art of Dying Well as well as subject expertise and networks they had media and design expertise.
Do not be afraid to engage with the media. Ask for help from people who can support you. The media engagement was a key part of the dissemination and in fact became part of the evaluation. As well as social media, radio and TV, newspapers were important. We had articles in the tabloid newspapers including The Daily Mail and The Sun. I learnt that the Mail Online Monthly digital reach of 218 million (2019). We then went onto analyse the online newspaper comments and twitter comments, a novel way, to understand the public view of the guides.
A grant from the Strategic Priorities Fund, UK has enabled us to undertake individual and focus group interviews with twenty healthcare professionals to understand their views regarding using the Guide to Deathbed Etiquette in end-of-life care. These interviews indicate the potential for the Guide to have a positive impact on end-of-life communication, for healthcare professionals and the public, as well as pointing towards ways in which communication about death and dying could be improved.
We now are applying for funding to find out carers’ views of the guide and to design a complex intervention to introduce the Guide into end-of-life care settings, and to the wider public.
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