Resource launched to aid end of life discussions with young adults

The National Council for Palliative Care (NCPC) has launched a new resource for families and professionals to use when having end of life discussions with young adults.

Working in collaboration with charity, Together for Short Lives, the NCPC hopes to help families to have difficult conversations with young adults about life-limiting conditions and help improve their quality of life.

The guide titled, ‘Difficult conversations for young adults’, was created after conversations with 13 young adults living with life-limiting health conditions and families who have cared for them in the past.

Chief executive of the National Council for Palliative Care, Claire Henry, 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.”

The NCPC has stressed that the guide has a ‘focus on living, not dying,’ they recognise that there are times when professionals and families would find information on how to talk about issues that relate to dying useful. The guide can help when talking about wishes for future care plans and how they want to be remembered, advice that can help families and young adults alike.

Lucy Watts has a life-limiting condition, speaking about her own experiences, she 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.”

Director and executive director of Together for Short Lives, Lizzie Chambers, 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.”

The guide is one of many in the ‘Difficult Conversations’ series published by the NCPC covering a range of topics including, dementia, motor neurone disease and heart failure. Books are written and targeted at carers, both professional and unpaid and aim to help start conversations about improvements to quality of life and end of life care.

To view the guide, visit: http://www.ncpc.org.uk/sites/default/files/YoungAdults_Final_CMYK_Web_singles%20Web%20version.pdf