Death Cafés are helping to remove the taboo associated with talking about death. Sharan Watson considers how these local initiatives are providing opportunities for honest conversations and placing talking about dying, death and bereavement firmly on the national agenda.
In 2009, the National Council for Palliative Care (NCPC) set up the Dying Matters Coalition to promote public awareness of dying, death and bereavement. The philosophy behind this is to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. While acknowledging that this would involve a fundamental change in society in which dying, death and bereavement would be seen and accepted as the natural part of everybody’s life cycle, we need to balance this with society not feeling awkward and shying away.
So, compromise is more reasonable, by being able to provide opportunities for open and honest conversations and being courageous about introducing the conversations when this is appropriate. Signposting of services available and knowing within our local communities where we can go to have these open and honest conversations, has supported the developments of such initiatives as Death Cafes and support groups.
Our lack of openness may affect the quality and range of support and care services available to patients and families, by missing opportunities, when we could have explored individual wishes and preferences. This is much broader than discussions of preferred place of care/ preferred place of death, or whether there is a decision for not attempting cardiopulmonary resuscitation. These conversations should consider escalation of care and treatment if needed, sharing information about what is spiritually and psychologically important to us and who we would want to be involved in our care and decision-making process etc.
Compassionate communities are growing, with developments amongst the voluntary sector and partnership approaches to supporting those persons with palliative and end of life care needs, and those important to them.
Within Derbyshire, we are building our compassionate communities and enhancing our partnership working across a range of acute, community, voluntary, charitable and educational services within our Derbyshire Alliance for End of Life Care. There is an online hub of public facing information and professional information freely available on our End of Life Care Toolkit.
Last year, the Derbyshire Alliance for End of Life Care joined together again to create an event which promoted the importance of talking about death and dying and sharing your wishes with others in line with the national Dying Matters Awareness campaign. We wanted to make sure that as many people as possible in our area knew what they should be thinking about, and what they should be communicating, as well as the places they can go to access information and support both in making preparations and when they or a loved one are at the end of their life. We collaboratively delivered a relay challenge, in which the wishes of one person, Helen, who is nearing the end of her life, travelled around Derby carried by members of the alliance to represent the idea of sharing information with the relevant organisations.
Each of the stops along the relay held a pitstop café, where members of the public could head for a hot drink, some cake, and the chance to find out what they can do to plan ahead for the end of their life, or support somebody else.
In Derbyshire, we are starting to plan ahead for the next Dying Matters Awareness Week, which happens every year in May. Dying Matters and our coalition members host an Awareness Week, which gives us an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
In 2018, the week will run from May 14-20 and, due to the huge success of this year's theme, we will be asking again "What Can You Do?" but the sharing of wishes and preferences needs to be considered at any opportunities that it is appropriate and is everyone’s business, all year round.
We have also produced this short film capturing the thoughts of Derbyshire people, talking about what is important to us around end of life care, available at: Derbyshire.eolcare.uk.