Guidance: End of life discussions with young adults

A new resource from the National Council of Palliative Care and Together for Short Lives has been developed to help families and professionals approach conversations with young adults about the end of life.

Talking to young people with life-limiting conditions can help improve their quality of life and give peace of mind for families. 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 had 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.”

This title is the latest from the National Council for Palliative Care in the popular Difficult Conversations series, and is available to purchase online for £5. The other Difficult Conversations booklets look at a range of conditions, and aim to help anyone, paid or unpaid, caring for someone with COPD, Dementia, Motor Neurone Disease and Heart Failure, to open up conversations about end of life wishes and preferences, in order to enhance quality of life. To coincide with the launch, the series of five is available to purchase online for £15.