Difficult Conversations for Young Adults, funded by Roald Dahl’s Marvellous Children’s Charity, was developed following conversations with 13 young adults with a life-limiting condition and families who have cared for a young person in the past. The resource has been created to support health professionals in having difficult conversations with the growing number of children and young adults with life-limiting conditions who come into their care.
Although the overwhelming message from the young adults and families in this guide was ‘we want to focus on living, not dying’, they also recognised that there are times when it is not only necessary, but helpful to talk about issues to do with dying. Having an honest conversation about wishes for future care and how young adults wish to be remembered, can bring peace of mind to both them and their family.
Speaking today, Claire Henry, Chief Executive of the National Council for Palliative Care, said:
“It’s completely understandable that young adults with life-limiting conditions want to focus on making the most out of life, but speaking openly with them about end of life issues can help to ensure they receive the care they want and have their wishes met, and allows them to get on with living.”
Lizzie Chambers, Director & Executive Director of the UK Transition Taskforce from Together for Short Lives, said:
“We all find it hard to talk about dying. It is a difficult conversation yet such an important one to have, especially between young adults and their families, and those who care for them. Having that conversation allows young adults to express their final care needs, ensuring their wishes are met. We’re so grateful for everyone who helped us develop this resource, especially the young adults who took the time to speak with us on such sensitive matters. We hope that this booklet will help families and professionals open up and feel comfortable approaching future conversations.”
Lucy Watts, Young adult with a life-limiting condition, said:
“Talking about the end of your life is never easy; however the sense of relief when we completed my end of life plan was huge. Now I have all my wishes down in writing, letting all professionals – as well as my family – know what I want, and that is so important. I became involved with the project to show how vital it is that we all make our wishes known, and for my experiences to inspire others to think about their wishes. I also wanted to show to professionals that there is no right way to broach the conversation, they need to be kind, sympathetic and supportive to make the conversation work and for the person to feel comfortable to open up and have their wishes and innermost thoughts put down on paper.”
The resource has been funded by the Roald Dahl Marvellous Children’s Charity’s Family Resilience Programme. We hope it provides professionals and families with helpful support and advice for approaching such sensitive conversations in the future.