Talking to young people with life-limiting conditions can help improve their quality of life and give peace of mind for families.
Now a new guide, ‘Difficult conversations for young adults’, 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.
It 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.
Although the overwhelming message from the young adults and families in this guide is “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.
Lucy Watts, who has a life-limiting condition, explains: “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.”
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 and executive director of the UK Transition Taskforce from Together for Short Lives, added: “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.”
If you would like a copy of ‘Difficult conversations for young adults’, which has been funded by the Roald Dahl Marvellous Children’s Charity’s Family Resilience Programme, please email email@example.com or download the PDF version from the Together for Short Lives website.
The National Council for Palliative Care has published a number of similar guides as part of its ‘Difficult conversations’ series. Other booklets in the series 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. The series is available to purchase through the NCPC website.