Roald Dahl’s Marvellous Children’s Charity helps young people talk about end of life issues as part of Dying Matters Awareness Week
Within their Family Resilience Programme, Roald Dahl's Marvellous Children's Charity has been working in partnership with the charity Together for Short Lives to create a booklet helping young people with life-limiting conditions talk about end of life issues.
To highlight Dying Matters Awareness Week, the Charity shares the foreword from the booklet, written by a young girl, Lucy with a life-limiting condition.
"Why do we wait until we’re dying to think about our plans for the end of our lives? If we all had a plan drawn up - which we can change at any time - we could get on with life knowing that our final wishes have been discussed and put down in writing. Doing my own end of life planning was difficult but it gave me a feeling of relief when it was completed. Unfortunately there is no given way to broach the conversation; you have to get a feel for the person and the family before you can gage the approach to take. You must go in with an open mind and listen to the individual and respond appropriately.
It’s a difficult conversation - as the title says - so each different person will have a different outlook on life, different wishes and different reactions, and need a unique approach. Professionals need to get to know the person first and to build up the trust before you can jump in and start talking about end of life care. Having a bond with and trust in the person you are telling your intimate wishes to is so important. I am fortunate it was my hospice nurse of three years who helped me to do my plan, with my mum present as I requested, and we have such a good bond. I feel comfortable with her and that is essential. She led the conversation in a way that was sympathetic, unbiased and attentive. She let me talk as much or as little as I wanted and put as much of what I said I feel and need into my end of life plan as possible. I have no problem talking about my mortality, but not everyone shares my ability and comfort in talking about the end of their life. Be calm, compassionate and put the person at the centre of the conversation. It’s their life, and their death, after all."
You can download the booklet from Together for Short Lives website.