14. What will comfort you at the end of your life?

Last month, the DAPPLE team held three creative workshops in Yorkshire as part of our Co-production ‘Roadshows’ (so-named by my colleague Richard as an homage to the Radio 1 summer events). A wide range of people came to the workshops: people with a learning disability (including some with profound and multiple learning disabilities), support workers, and other professionals. 

Everyone in the room was invited to answer the question: What will comfort you at the end of your life? using a colourful selection of art materials (including cut-out paper shapes, fluffy fabric, and foam hearts and flowers).  In earlier workshops at our other study areas, we had posed a slightly different question: What is important to you before you die?  While this is a key question, arguably, it was a question too broad – and therefore difficult to fully do justice to in the format of a short activity working with a diverse group.  Ahead of the Yorkshire workshops, DAPPLE Lead Irene suggested reworking the question to focus on the simpler, yet no less significant concept of ‘comfort’.  (I believe this suggestion was in part inspired by one of the When I’m Ill cards from The Victoria and Stuart Project toolkit for end of life care planning with people with learning disabilities

Comfort provided us with a gentle concept to introduce to the diverse people we met at the workshops.  It also placed the focus very much on each individual, inviting them to think about personal preferences that would make a difference to them at the end of their life. Across the workshops, it was wonderful to see how readily the groups engaged with this question, and the creative ways they shared their ideas with us through art.  We learned about poignant sources of comfort unique to individuals (having your nails painted, peanut butter, Barry Manilow) as well some that were shared by many (hot drinks, sunshine, time together with loved ones, as well as quiet time in peace). 

We are very grateful to everyone who joined us at the workshops.  It was wonderful to meet so many new people.  A big thank you to Gerard Wainwright and the team at St Anne’s Community Services in Huddersfield for welcoming us so warmly and for supporting the sessions across the week. 

Written by Fred Inglis, Research Associate at Kingston University London