My work is all about creating opportunities and spaces for people to talk openly about death, dying and grief. I was therefore very excited when I was recently commissioned, by an NHS End of Life Care Transformation Programme, to interview local people about their experiences of using the local end of life care services.
My role was to interview people living in the local area who either had a life-limiting condition, were caring for someone with a life-limiting condition or who had been bereaved. The aim on these conversations was to get as real a picture as possible of the things that have helped them and the things that haven’t and to get a better sense of how local services could be more sensitive to people’s differing needs, cultures and circumstances. The findings have helped inform a proposal for improved end of life care services.
There are some pieces of consultancy work that I’ve been asked to do, that leave a lasting impact and this end of life engagement project was one of them.
It was a total honour and privilege to meet these people, and their families, and to listen to their stories. Some of the experiences they shared, particularly around their challenges accessing and using services, were, at times, hard to hear.
The need for open, honest and compassionate conversations right from the start
The key thing that stood out for me from these conversations was that, despite all the amazing work taking place to challenge preconceptions and normalise public openness around dying (led by Hospice UKs Dying Matters campaign), in many health and social care settings, there are still a lack of conversations happening about death, dying and end of life care planning.
Many of the people I spoke with told me there had been no, or few, discussions with their health care providers about:
- their prognosis and what they could expect going forwards; and;
- what would happen if their health were to suddenly deteriorate, and how, and where, they wished to be cared for at the end of their life (i.e. urgent care and end of life care planning).
Of course there were some people who I talked with who were very clear that they didn’t want to have these conversations – at least not yet. However, many told me that they did want to talk, and they needed to talk.
However uncomfortable we might feel having these conversations, shouldn’t we at least be offering people the opportunity, and the choice, to talk and plan?
Starting these conversations doesn’t need to be complicated.
Do contact me if you would like to any further information about my work